News Archive: Members

Expert Patient spotlight - Ms. Flavia Kyomukama, Executive Director of the Action Group for Health, Human Rights and HIV/AIDS (AGHA) Uganda

Members
As the world gears up to observe Patient Solidarity Day on December 8th, IAPO is proud to highlight the invaluable contributions of Ms. Flavia Kyomukama, a distinguished patient advocate, and Executive Director of the Action Group for Health, Human Rights and HIV/AIDS (AGHA) Uganda. Ms Kyomukama, a...

IAPO's Combined Annual General Meeting (AGM) for 2022 and 2023

Members
IAPO will hold its Annual General Meeting on Wednesday 6 December 2023 at 12.00pm GMT . This is a members only event and registration is required. At the AGM, we will announce the results of the Governing Board Elections. The meeting will be in English with simultaneous translation into Spanish...

WHO Informal Consultation with People Living with Noncommunicable Diseases and Mental Health Conditions in the African Region

Members
The World Health Organization (WHO) is developing a Framework for Meaningful Engagement of People Living with NCDs (PLWNCDs) and Mental Health Conditions (MHCs) that will guide WHO and Member States in the meaningful engagement of PLWNCDs and MHCs in co-designing NCD and MHC policies, programmes,...

IAPO statements at the WHO Executive Board 150th session, January 2022

Members
The 150th session of the World Health Organization’s Executive Board (EB) took place virtually on 24th - 29th January 2022. Thanks to IAPO’s official relations status with the World Health Organization, we leveraged this meeting by delivering three statements in line with our call for global...

Innovating to beat NCDs - Submit your application for the second cycle of the NCD Lab

Members
The WHO Global Coordination Mechanism on NCDs (GCM/NCD) invites you to submit your applications for the second cycle of the NCD Lab, a virtual initiative that aims to raise awareness of NCDs and to identify innovative and cross-cutting initiatives working towards reducing the global burden of NCDs...

Call for Asia-Pacific Patient Organizations’ participation and contribution to APPC 2021

Members
The International Alliance of Patients’ Organizations (IAPO) is committed to broadening the participation and contribution of Asian-Pacific patient organizations to the 3rd Asia-Pacific Congress 2021 (APPC 2021), which will address the issue of the recovery of health systems in the region and will...

Call for delegates: the 4th Global Youth Meet on Health

Members
With 1.2 billion people aged 15-24 years, the world’s youth population has a key role to play in addressing challenges related to public health, including all diseases and their determinants. The 4th Global Youth Meet (GYM) on Health is being held virtually by HRIDAY and WHO SEARO from 20-21 April...

European Parliament Interest Group on Innovation in Health & Social Care meeting

Members
IAPO recently took part in the European Parliament Interest Group webinar on Integration of health and social care to tackle disease outbreaks on 26 January 2021. The meeting intended to gather EU policymakers, academia, and representatives from healthcare associations and patients’ groups to...

Save Liver SLAP - Information sharing and protective materials donation to fight COVID-19

Members
Since the beginning of the pandemic in March 2020, our community is struggling with lack of scientific information for patients. There was a lot of misinformation among the general public and because of that the panic increased. Although the Ministry of Health regularly published information to...

Save Liver SLAP - Information sharing and protective materials donation to fight COVID-19

Members
Since the beginning of the pandemic in March 2020, our community is struggling with lack of scientific information for patients. There was a lot of misinformation among the general public and because of that the panic increased. Although the Ministry of Health regularly published information to...

Epilepsy Support Association Uganda (ESAU) and their work to provide accurate information on epilepsy and COVID-19

Members
Epilepsy Support Association Uganda exists to mobilize, organize, support, skill, care, and advocate for the rights of people with epilepsy to live a dignified life. In October 2020, ESAU with the support of the IAPO COVID-19 Response Activity Grant, embarked on raising awareness to its members on...

Action Group for Health, Human Rights and HIV/AIDS Uganda and their support to HIV widows during the COVID-19 pandemic

Members
Action Group for Health, Human Rights and HIV/AIDS Uganda (AGHA) is a health and human rights advocacy organization in Uganda dedicated to raising awareness of human rights aspects of health, quality of health and health care for all Ugandans. With support of IAPO’s COVID-19 grant, AGHA researched...

Building the IAPO membership community in 2021

Members
2020 was a turning point for us at IAPO, where the COVID-19 pandemic and all its lessons gave us an opportunity to review, adapt and improve our work, and more importantly strengthen the IAPO membership community. We worked hard last year to amplify the patients’ voice at various fronts - please...

IAPO's COVID-19 Response Activity Grant Scheme

Members
In 2020, IAPO launched the COVID-19 Response Activity Grant Scheme to support IAPO members working on the frontline to support patients during the pandemic. Through a competitive 2-stage selection process initiated via the 9th Global Patients Congress (GPC 2020) Open Call, we invited our Member...

IAPO Governing Board Elections 2020

Members
We are pleased to announce the following five candidates are up for election to the IAPO Governing Board. All members of IAPO are invited to vote for their preferred candidate. Further information on this can be found on our governance page .

The patient journey of people actively looking for clinical trials

Members
Article by Daniela Shikova, General Manager at FindMeCure Foundation “85% of clinical trials fail to recruit and retain enough patients in order to meet their enrollment timeline” – a number which we see quite often in analyses, publications, or events presentations within the clinical research...

New tool: WHO Academy COVID-19 learning app

Members
WHO has recently launched a new learning app targeted specifically to health workers who need accurate, extensive, reliable, and timely information on COVID-19 to save lives and stay safe. The app was created in direct response to an online survey of health works conducted by the WHO Academy in...

IAPO Members stories on COVID-19

Members
Overview The COVID-19 pandemic has brought up immense challenges to how patients experience healthcare. Medicines shortage, disruption of treatments and difficulties to access mental health services are some examples of the problems they face. On the other hand, many patients have also benefited...

Self-Care Readiness Index Consumer survey

Members
The Global Self-Care Federation (GSCF), in its efforts to aid in the understanding and development of a world where self-care increasingly contributes to better health and more sustainable healthcare systems, invites you to participate in a patient survey gauging knowledge and attitudes towards...

Membership Notice: IAPO Board Member, Carol Ossai Passes Away

Members
The Board and members are deeply saddened to announce that IAPO Board Member, Carol Ossai, passed away on Friday, April 10th, 2020. Carol was a passionate advocate for the improvement of care and treatment for people living with Sickle Cell Disease (SCD) and had been an IAPO member since 2016. In...

Open Call for Congress 2020 presentations

Members
We are delighted to announce that the open call process for presenters for the 9th Global Patients Congress to be held in Edinburgh, Scotland is now live! Please apply below. Each Congress, in line with our mission of actively working with patients' organizations and building them up to be as...

Insight on universal health coverage from IAPO

Members
IAPO CEO Kawaldip Sehmi was recently featured on the UHC2030 blog where he gave his persepective through an interview on the role of patients and patients' organizations in achieveing universal health coverage. Do take a look, and feel free to share. “The International Alliance of Patients’...

PSD2019: patient advocates call for accountability on promises made

Members
Accelerating progress for patient-centred Universal Health Coverage Patient Solidarity Day (PSD) 2019 has come and gone and we thank and congratulate everyone who joined the campaign and helped spread the word on accelerating progress for safe patient-centred Universal Health Coverage (UHC). This...

Meeting new IAPO member: Lupus and Allied Diseases Association

Members
We welcome Lupus and Allied Diseases Association, to IAPO. To help the rest of the network get to know them, they have answered a few questions about the interesting work they do, why they are involved in patient advocacy and their thoughts and expectations as they join IAPO. Why are you involved...

Take our Global Survey on Access to Healthcare

Members
IAPO is conducting a series of global surveys to shadow and assess the roll out of Universal Health Coverage and factors affecting patients' access to safe , quality, acceptable and affordable healthcare globally. We are inviting you to participate in it. The level of access to healthcare that a...

Member participation needed!

Members
IAPO is a partner in the exciting Medicines We Can Trust Campaign - a global coalition to raise awareness of and call for action on safe, quality medicines. . As part of the campaign, we are looking for compelling stories that showcase the human impact of poor-quality medicines. Poor-quality...

IAPO at the 72nd World Health Assembly

Members
Patients in full support of the development of gene and cell therapy The 72nd annual World Health Assembly ( #WHA72) took place in Geneva from 20-28 May. The IAPO team was represented throughout the WHA and hosted an event on the side-lines of the 72nd World Health Assembly. Here’s our wrap up. In...

World Health Statistics 2019 disaggregated by sex for the first time

Members
The World Health Statistics series is the World Health Organization’s (WHO) annual compilation of health statistics for its 194 Member States. The series is produced by WHO’s Division for Data, Analytics and Delivery, in collaboration with WHO technical departments and regional offices. The 2019...

Patient Organizations at the 72nd World Health Assembly

Members
In the lead up to the 72nd World Health Assembly happening between 20 - 28 May, IAPO will be doing a series that aims is to provide insight into how the WHO works with patients’ organizatons and the benefits of these collaborations as well as how they are established. This series aims to assist...

Puntos más destacados de la 4ta Cumbre Ministerial Gloibal sobre la Seguridad del Paciente

Members
La agenda sobre la seguridad global del paciente continúa cobrando impulso con la reunión de los profesionales de salud que tuvo lugar en Jeddah, Arabia Saudita el 2 y 3 de marzo 2019, dentro de marco de la 4ta Cumbre Ministerial Mundial sobre la Seguridad del Paciente. El énfasis de la cumbre este...

Highlights of the 4th Global Ministerial Summit on Patient Safety

Members
Momentum continues to be built for the global patient safety agenda as health stakeholders gathered in Jeddah, Saudi Arabia between 2-3 March 2019 for the 4th Global Ministerial Summit on Patient Safety. The focus of this year’s summit was to develop and define strategies that would support the...

Rare Diseases and Universal Health Coverage : a mutually reinforcing agenda

Members
Rare Disease Day 2019,a day to raise awareness amongst the general public on rare diseases and encourage researchers and decision makers to address the needs of patients with rare diseases was this year marked with a lot of activity. One notable activity was the NGO Committee for Rare Disease...

Sexual life and Multiple Sclerosis: A video animation

Members
Sexual intimacy challenges can be a difficult topic to talk about, even though common for people with and without chronic conditions. To get the conversation going about sex and multiple sclerosis (MS), MS International Federation (MSIF) – an IAPO member – has recently launched an animation looking...

Meeting new IAPO member: Building Lives Foundation, El Salvador

Members
We welcome Building Lives Foundation, El Salvador, to IAPO starting from January 2019. They have answered a few questions about their work, why they are involved in patient advocacy work and their thoughts and expectations as they join our global network. Why are you involved in the work that you...

The Ugandan community marks PSD2018

Members
On the 6th of September 2018, Community Health and Information Network (CHAIN) in partnership with Uganda Alliance for Patients Organisation (UAPO), organized the Patient Solidarity Day (PSD) 2018, in Kiwenda Nabitalo, Wakiso district. The participatory event brought together over 200 participants...

IAPO member celebrated as a heart hero for World Heart Day

Members
We would like to congratulate IAPO member Migdalia Denis, President and Founder of Pulmonary Hypertension Latin Society who was celebrated as a heart hero for World Heart Day. Migdalia shares her story with us. I’ve been an advocate for Latin American patients since the foundation of Sociedad...

Renewable energy and healthcare: IAPO at IRENA

Members
Kawaldip Sehmi, IAPO CEO, attended the First International Conference on Renewable Energy for Healthcare (IRENA) in Singapore 2 November 2018 where a stimulating discussion took place around the availability of reliable, affordable and safe electricity supply that powers 90% of the health devices...

The expert patient is a resource that primary health care must utilise

Members
IAPO as a global patients' organisation must appreciate the globalism of health care initiatives and their links with the global economic, social, political and technological developments. The Declaration on Primary Health Care Astana adopted on 25 October 2018 in Astana Kazakhstan must be...

IAPO member joins Council for International Organizations of Medical Sciences working group

Members
IAPO Member, Regina Mariam Kamoga from Community Health and Information Network (CHAIN) in Uganda, shares her experience in joining the Council for International Organizations of Medical Sciences (CIOMS) working group aimed at involving patients in the development and safe use of medicines. Gone...

IAPO member CUI.D.AR supercharge their advocacy efforts for Type 1 Diabetes

Members
The Association for Diabetes Care in Argentina, CUI.D.AR, together with a group of children and young adults with type 1 diabetes, met with the Argentinian Minister of Health, Dr. Adolfo Rubinstein, and members of Congress Nicolás Massot and Carmen Polledo and the National Senator Esteban Bullrich...

White paper launched to drive action for sustainable action for circulatory health

Members
On 25 September, just ahead of the High-Level Meeting on NCDs, the Global Coalition for Circulatory Health , which IAPO is part of, launched a new White Paper for Circulatory Health: Driving Sustainable Action for Circulatory Health . The white paper is a solution-oriented paper which draws on...

Patients called upon to support a commitment for action on air quality

Members
On 30th October, WHO will host the First WHO Conference on Air Pollution and Health in Geneva .The conference is in response to a World Health Assembly mandate to combat one of the world’s most significant causes of premature death-air pollution. This conference will look at how air pollution...

Fight the Fakes: ´Making each dose count´

Members
On Saturday 21st July 2018, IAPO member Mary Lynne Van Poelgeest-Pomfret of World Federation of Incontinent Patients represented IAPO and the Fight the Fakes campaign at the 22nd International AIDS Conference in Amsterdam at the Imperial Health Sciences’ Pre-Conference Side-Event. Here she joined a...

Meeting new board members: Ya Hsin Wang

Members
We welcome Ya Hsin Wang, Secretary General of Psoriasis Association Taiwan and the executive director of Taiwan Alliance of Patients' Organizations, to our Governing Board starting from August 2018. Ya Hsin answered a few questions about her work, what she brings to IAPO and why she is involved in...

Meeting new board members: Ellos Ellard Lodzeni

Members
We welcome Ellos Ellard Lodzeni, Patron and Founder Trustee of Patient and Community Welfare Foundation of Malawi, to our Governing Board starting from August 2018. Ellos answered a few questions about his work, what he brings to IAPO and why he is involved in patient advocacy work. Why are you...

IAPO member, Psoriasis New Life El Salvador advance their efforts towards patient centred healthcare

Members
Evelyn de Aguirre of Psoriasis New Life El Salvador shares her organization’s experience in their advocacy for people with Psoriasis and Psoriatic Arthritis in El Salvador which has culminated in a working alliance between them and the Ministry of Health of El Salvador. Psoriasis New Life El...

Meeting new board members: Karen Alparce-Villanueva

Members
We welcome Karen Alparce-Villanueva, Vice-President of the Philippine Alliance of Patient Organizations (PAPO) and founder of Rare Cancers Philippines, to our Governing Board starting from August 2018. Karen answered a few questions about her work, what she brings to IAPO and why she is involved in...

Three additions to the IAPO Governing Board

Members
At IAPO's Annual General Meeting at the 8th Global Patients Congress in Miami, 24 -26 May, three IAPO members were elected to the Governing Board. New Governing Board Members - Karen Alparce-Villanueva, Philippine Alliance of Patient Organizations (PAPO) - Ellos Ellard Lodzeni, Patient and...

Congress 2018: a step forward for the global patient movement

Members
Overview of GPC2018 Sessions The 8th Global Patients Congress has been organized to look at patient engagement and patient empowerment within the healthcare value chain. We have mapped best practice examples of patient engagement and empowerment within our alliance and multi-stakeholders. We have...

Real-World Evidence in Medicine Development Course starts April 16th

Members
Following the successful first edition of the course Real-World Evidence in Medicine Development: an online introductory course , we are happy to announce that the new edition has been set to start on April 16th - 27th May 2018​. During this 6-weeks interactive online course, you will learn about...

The changing paradigm of patient care: IAPO at the symposium on Future of Patient Care in India

Members
IAPO Board Member Dr. Ratna Devi represented IAPO as a panellist at the symposium on Future of Patient Care in India which aimed to unravel the possibilities of future patient care and the roles pharmaceutical producers may assume to adapt to this changing consumer behaviour of the patient. In...

Rheumatoid Arthritis Foundation of Panama, Panamanian Association for the Prevention of Sickle Cell Anaemia and Panama Psoriasis Foundation unite for PSD

Members
La Fundación de Artritis Reumatoide de Panamá, en conjunto con la Asociación Panameña para la Prevención de la Anemia Falciforme y la Fundación Psoriasis Panamá, nos unimos para la realización de actividades en Conmemoración del Día Internacional de la Solidaridad con el Paciente. Estas tres...

Colorectal cancer organizations share what patient empowerment means to their area

Members
The Global Colon Cancer Association (GCCA) is a proud member of IAPO and supporter of Patient Solidarity Day. The GCCA is the only international nonprofit patient organization dedicated to colorectal cancer. The vision of the GCCA is to create a global community in which people around the world can...

IAPO members’ PSD2017 photo competition

Members
In the time leading up to and on the actual day of the Patient Solidarity Campaign day, send us your photographs that best capture the patient empowerment experience from your perspective. By doing this you enter our PSD 2017 photo competition that gives you the chance to be the Patient Solidarity...

Effective patient involvement: building knowledge from the ground up

Members
Isabel Saraiva chair of the European Lung Foundation discusses what effective patient involvement is. I recently started my three year term as chair of the European Lung Foundation (ELF), an organisation that brings together patients, the public with respiratory healthcare professionals to...

Real-World Evidence in Medicine Development Course starts October 2nd

Members
This is an interactive online course, which is aimed at anyone interested in knowing more about opportunities and challenges for the use of real-world evidence in medicine development. It is an ideal resource for anyone who wishes to become familiar with the key issues in the areas of real-world...

Resumen de Políticas #7 – Manejo del Dolor

Members
El tema del resumen de políticas de este mes trata sobre el manejo del dolor. La declaración sobre la atención sanitaria centrada en el paciente de IAPO IAPO’s Declaration on Patient-Centred Healthcare establece que a pesar de representar a los pacientes provenientes de enfermedades muy diferentes, el énfasis debe ser en atender todas las necesidades comunes de todas las comunidades de pacientes, sin importar cual es su área de enfermedad.

Día de la solidaridad con el paciente 2017

Members
El tema ganador es: Empoderamiento de los pacientes

Regulatory cooperation and harmonisation – the WHO vision

Members
Samvel Azatyan, Group Lead, Regulatory Networks and Harmonisation,World Health Organization, explores medicine regulation and harmonisation highlighting the role that the WHO is playing. Access to health care and medical products is one of the fundamental human rights. WHO is committed to enhancing...

Give a Squat 4 Pain campaign

Members
Don't just sit there, September is pain awareness month. Regardless of your priorities, the campaign can be easily adapted for use in your local and national activities. Through a global effort we can together achieve increased awareness among relevant stakeholders so that chronic pain can be recognised, effectively treated and managed.

IAPO’s African members come together in Entebbe, Uganda, to call for a patient-centric African Medicines Agency

Members
On 4th - 5th July 2017, 30 of IAPO’s member organizations and stakeholders, representing ten African countries, came together in Entebbe, Uganda, to attend our African Regional Meeting. The meeting culminated in delegates making a united call for a patient-centred African Medicines Agency (AMA), in...

The 2017 Bakken Invitation Award: Building a Philanthropic Movement of Patients Who “Live On. Give On. Dream On.”

Members
When Roberta Alves Silva of Belo Horizonte, Brazil was diagnosed with type 1 diabetes at 14 years old, she spent years trying to understand and control her disease before using an insulin pump. But it took attending a camp for kids with diabetes to transform her life. “Being a part of the Colonia...

IAPO and UAPO African regional meeting: The role of patients in African harmonisation

Members
On 4th – 5th July, IAPO’s member organizations in Africa will be coming together to address the next steps forward for joined-up healthcare across the continent.

IAPO side-events at the 70th World Health Assembly

Members
We are pleased to announce the side-events that we are co-hosting at the 70th World Health Assembly, taking place from 22-31 May 2017 in Geneva, Switzerland. Biotherapeutics & the next 70 years: Delivering on their potential for patients globally Date: 23 May 2017 Time: 12:00-14:00hrs Location...

IAPO African regional meeting set for Uganda

Members
By Joshua Wamboga, IAPO Chair-Elect I am delighted that the Uganda Alliance of Patients’ Organizations (UAPO) will be co-hosting the key upcoming regional meeting for the International Alliance of Patients’ Organizations' (IAPO) members in Africa. The meeting which will take place in Uganda, 4-5​...

Another year closer to a tobacco-free world: World No Tobacco Day

Members
Kawaldip Sehmi, IAPO CEO, explores World No Tobacco Day marked every year on 30th May 2017.

“Safeguarding Blood Transfusion” side event confirmed for the 70th WHA

Members
We are pleased to announce that our side event " safety for the multi-transfused patients” has been confirmed to take place on Friday 26 May 2017 at the 70th World Health Assembly. Linked to WHA70 agenda item of “Principles for global consensus on the donation and management of blood, blood...

Supporting patient needs during a time of crisis

Members
At the 69th World Health Assembly in Geneva in May 2016, IAPO raised the issue of access to health services by chronically ill refugees, migrants and internally displaced people. This issue will be revisited during the forthcoming World Health Assembly in Geneva, Switzerland from 22-27 May, 2017.

IAPO to take over the Patient Research Exchange Program

Members
IAPO will take on the management of the Patient Research Exchange (PRE) platform from Novartis. This is in effort to allow IAPO member organizations to fully engage with the pharmaceutical industry through research and ‘be the change they wish to see in the pharmaceutical world!’ The Patient...

IAPO gears up for the 70th World Health Assembly

Members
IAPO is proposing to hold four side-events with various partners this year to celebrate WHO’s contributions made over 70 years towards eradication and controlling diseases, and more importantly, marking the great contribution made by WHO in promoting patient-centred health care and improving evidence based medicine through research, policy development, technical assistance and diplomatic advocacy. The side-events will also trigger the start of patient engagement in the long march towards achieving patient-centred universal health coverage by all Member States by 2030.

Power in the hands of patients: app innovations to make health systems more accountable

Members
Without transparent and accountable health systems, patients are less able to take the proactive role that is needed for patient-centred care to be achieved. National procurement and drug pricing systems that lack robust monitoring mechanisms can become open to corruption and exploitation, posing a...

IAPO member’s patient safety forum attracts global recognition

Members
You know your meeting is going to make a difference globally when two of the most powerful medical regulators turn up at your event. IAPO member, Consumer Online Foundation , pulled off this feat when it hosted a two day International Forum on Patient Safety and Safe Access to Online Pharmacies in...

Rare Diseases and Birth Defects Registry in developing countries

Members
Contributed by Thong Meow-Keong, Malaysian Rare Disorders Society (IAPO member) Rare diseases particularly birth defects are a major causes of disability in developing countries (1,2). There is lack of data on birth defects from large population-based studies in the Asia-Pacific region (3). The...

PATIENTS’ RIGHTS HAVE NO BORDERS

Members
On 1 March 2017, Active Citizenship Network is going to celebrate the first anniversary of its EU communication campaign on cross-border healthcare. Foreseen by Directive 2011/24/EU – it’s named Patients’ rights have no borders – with a multi stakeholder conference at the EU Parliament. The...

Anti-counterfeit Network Africa Launched

Members
On 15 February 2016, the Anti-counterfeit Network Africa was launched in Uganda to help in intensifying the fight against production & supply of Counterfeit drugs to ensure patient access to quality medicine. According to WHO, Substandard, spurious, falsely labelled, falsified and counterfeit (...

Resumen de políticas #1: Asistencia sanitaria centrada en el paciente

Members
El plan 2017 de IAPO sobre el empoderamiento y compromiso de sus miembros ( plan ) se centrará en cuatro áreas temáticas principales: asistencia sanitaria centrada en el paciente, acceso, responsabilidad y transparencia, y el tema del Día de la Solidaridad con el Paciente (nuestros miembros lo...

Act globally, think locally. It all leads to a WHO resolution….

Members
Sophie Andersson, Executive Director of the International Federation of Psoriasis Associations (IFPA), returns to the World Health Organization’s 140th Executive Board Session this year where in 2014 IFPA got through a historic resolution recognizing psoriasis as a non-communicable disease and...

Ayúdanos a elegir el tema para el Día de la Solidaridad con el Paciente

Members
Ayúdanos a elegir el tema para el PSD 2017​

Día de la Solidaridad con el Paciente – momentos estelares del 2016 y con mucho ánimo para llegar a diciembre 2017

Members
We are asking for everyone within IAPO’s network to send us suggested topics for the Patient Solidarity Day 2017 theme.

Plan de Empoderamiento y Compromiso 2017 – identificar los temas claves

Members
El 2016 fue un año extraordinario para IAPO y para nuestra comunidad de miembros y colaboradores! Durante el mes de abril, 2016, realizamos el 7mo Congreso Mundial de Pacientes que contó con la presencia de 136 delegados de diferentes disciplinas. En diciembre 2016, los pacientes de todo el mundo...

WHO Western Pacific Region getting ready for universal health coverage by 2030!

Members
The WHO Western Pacific Region (WHO WPR ) held its first technical advisory group on universal health coverage 12-14 December 2016 in Manila Philippines. This meeting was attended by many State and non-State actors in the Region. IAPO was represented by our member Josef De Guzman, President of Psoriasis Philippines.

Why we should always be there

Members
In November 2016, Anna Oliva from Acción Psoriasis, the Spanish Association of Patients of Psoriasis and Arthritis Psoriatic, had the opportunity to participate in the European He althcare Industry Training: Compliance Certification Program. In this article, she shared her experience and insight with us.

And finally…. animals as seasonal good health totems around the world

Members
This year our Christmas and New Year’s Card featured the mythical Fire-Fox; a symbol of good health and prosperity in the Suomi Tribes (Lapland Finland). After it went public, we were contacted by many patient organizations who wanted to share their own regional and national totem animal stories...

Historic launch of the UN NGO Committee for Rare Diseases at the UN New York

Members
New York witnessed a rare event on 11 November 2016. After decades of hard work, the rare diseases patient-voice final reached the ears of the United Nations and the world. The UN Headquarters on 405 East 42nd Street saw the launch of the NGO Committee for Rare Diseases (NGOCRD) The NGOCRD is a...

A regional NCD Alliance in Africa

Members
Dalilah Kalla, IAPO representative from member Lupus Alert (Mauritius), represented IAPO at two WHO and Civil Society meetings on Non-Communicable Diseases in Mauritius. By Dalilah Kalla, from Lupus Alert The establishment of an African non-State actors’ network and the development of a regional...

Thalassaemia International Federation leading postgraduate online patient centred medical education

Members
Dr. Androulla Eleiftheriou is the Executive Director of Thalassaemia International Federation (TIF) and an IAPO Board Member. In this specially commissioned article, she explores how patients at TIF have led the way in patient centred medical education. TIF set-up an innovative online MSc degree in...

The role of IAPO members in European research projects

Members
IAPO is part of Get Real , a multi-stakeholder research project of the Innovative Medicines Initiative (IMI) that aims to investigate how real-world evidence can be effectively used in the drug development process. Within the research consortium, IAPO is carrying out research on patients’...

FIFARMA se reúne para los pacientes de América Latina

Members
Informe de Kawaldip Sehmi, CEO de IAPO, sobre la reunión estratégica de FIFARMA en la ciudad de Panamá ! Un buen inicio: invite a los pacientes a observar! Como todos nosotros, es posible que usted esté buscando en Internet el significado del acrónimo FIFARMA . ¡Encontrará muy poco sobre él! La...

An African Medicines Agency - any room for African patients engagement?

Members
Board Member Joshua Wamboga reports from the World Health Organization Africa's 66th Regional Committee meeting held in Addis Ababa, Ethiopia, 19-23 August 2016 Saving the best for last Africa has a way of dragging out the best for last when it comes to important discussions on health. The World...

7th Global Patient Congress - The Report

Members
Innovation improving sustainable access: boosting your reach and impact.

Meeting new board members: Migdalia Denis

Members
This August, Migdalia Denis, from the Pulmonary Hypertension Latin Society, will join the IAPO Governing Board.

El control social hecho por las organizaciones de pacientes de diabetes delante del retroceso y la crisis en Brasil

Members
El control social hecho por las organizaciones de pacientes de diabetes delante del retroceso y la crisis en Brasil. Disponible en portugus.

Bakken Invitation Award: living with a medical device

Members
The Medtronic Foundation is now accepting applications for the Bakken Invitation Award, an international award celebrating the philanthropic power of patients.

Two more new faces on the Governing Board

Members
We are pleased to announce that Hussain Jafri , from Alzheimer's Pakistan, and Bejon Misra , from Consumer Online Foundation (India), will be joining the IAPO Governing Board in August 2016.

Speaking out during economic uncertainty

Members
IAPO members represent patients around the world and often deal with challenges such as funding cuts, changes in administrations and wider economic uncertainty.

Meeting new board members: Hussain Jafri

Members
We will be welcoming Hussain Jafri, Secretary General for Alzheimer's Pakistan, to our Governing Board in August 2016.

Meeting new board members: Bejon Misra

Members
We will be welcoming Bejon Misra, the founder of the Consumer Online Foundation, India, to our Governing Board in August 2016. Bejon answered a few questions about his work, what he brings to IAPO and why he is involved in patient advocacy work.

Tackling diabetes at grassroots level in Uganda

Members
IAPO member, Uganda Platform for Diabetics (UPLAD), has been developing innovative ways to tackle diabetes in community settings. By starting and running ‘Diabetic Camps’ in different locations across Uganda, UPLAD has managed to screen, diagnose and educate many people through one day events.

Un impulso hacia la Cobertura Universal en Salud: un adelanto para los pacientes en Argentina

Members
La contribución de Isabel Rolando, presidenta de Concebir. Concebir fue fundada hace 20 años y Miembro de la International Alliance of Patients’ Organizations desde el Congreso de Budapest de 2007.

Bladder problems are not an inevitable part of aging

Members
Bladder problems are not an inevitable part of aging. Find out more during World Continence Awareness Week, 20-26 June 2016.

Meeting new board members: Androulla Eleftheriou

Members
We will be welcoming Androulla Eleftheriou, Executive Director of Thalassaemia International Federation, to our Governing Board in August 2016. Androulla answered a few questions about her work, what she brings to IAPO and why she is involved in patient advocacy work.

Meeting new board members: Andrew Spiegel

Members
We will be welcoming Andrew Spiegel, Executive Director of Global Colon Cancer Association, to our Governing Board in August 2016. Andrew answered a few questions about his work, what he brings to IAPO and why he is involved in patient advocacy work.

Meeting new board members

Members
We are really pleased to introduce Androulla ​ Eleftheriou and Andrew Spiegel, two of our new Governing Board members, who will begin their terms in August 2016. Both answered a few questions about their work, what they will bring to IAPO and why they are involved in patient advoacacy.

Five additions to the IAPO Governing Board

Members
At the Global Patients Congress, five IAPO members were elected to the Governing Board.

‘¿Tus riñones están bien?’ El día mundial del riñón

Members
El 10 de marzo 2016 se celebrará el undécimo día mundial del riñón. El tema de este año es ‘Niños y enfermedad renal. ¡Actúa a tiempo para prevenirla!’. El día se centrará en mejorar la educación, facilitar la detección precoz y asegurar de que durante toda la vida de un individuo – desde el nacimiento – todos está bien equipado para combatir y controlar la enfermedad renal.

Medicamentos Biosimilares, un problema apremiante, todavía para los Pacientes de todo el mundo

Members
Entre el 4-6 Febrero 2016, EFCCA (The European Federation of Crohn’s and Ulcerative Colitis Associations) junto a GAfPA (Global Alliance for Patient Access), organizaron un taller sobre la defensa de la seguridad del paciente en Barcelona que reunió cerca de 60 representantes de pacientes de un amplio rango de grupos de enfermedades inmunes moduladas y otras organizaciones.​

Addressing stigma in mental health

Members
Excerpts from the 'Presidential New Year Message 2016', by Gabriel Ivbijaro MBE JP, President of the World Federation for Mental Health.

Los miembros de la IAPO participan el primer taller “Pacientes en defensa de su seguridad” en Uganda

Members
Los miembros de IAPO, CHAIN (La Red de Salud Comunitaria e Información) y UAPO (La Alianza de Organizaciones de Pacientes en Uganda) trabajaron con la OMS (La Organización Mundial de Salud) para organizar el primer taller del programa Pacientes en defensa de su seguridad en Uganda en noviembre del 2015.

Join a Virtual Global Discussion Forum on NCDs

Members
Tomorrow, the WHO Global Coordination Mechanism on the Prevention and Control of Non-Communicable Diseases (WHO GCM/NCDs) is launching a Virtual Global Discussion Forum on NCDs and they want to hear your views.

'Solamente podemos ser fuerte juntos'

Members
We interviewed Anders Olauson, President of the European Patients Forum, about his organization, patient-centred healthcare and why he became involved in patients' rights. ​

Día de Solidaridad con el Paciente 2015

Members
Muchas gracias por su fantástico apoyo para el Día de Solidaridad con el Paciente del año pasado . Significa mucho para nuestra alianza y ayudó a hacer del día un gran éxito .

No estamos solos

Members
En agosto, después de nuestra reunión regional en la Ciudad de Panamá, fue un placer de visitar uno de los miembros locales de la IAPO, la Fundación Psoriasis de Panamá (FPP), y averiguar acerca de su trabajo.

Launching our new Membership Guide

Members
We are really pleased to launch our new Membership Guide!

IAPO member takes opportunity to meet IAPO Chair

Members
IAPO Member Regina Kamoga, from Community Health and Information Network (CHAIN Uganda), recently visited Poland at the invitation of Jolanta Bilińska, President of Patients Safety Foundation and IAPO Chair.

Kidney cancer network reaching out to patients' organizations worldwide

Members
The International Kidney Cancer Coalition is actively looking to reach out and connect with patient organizations who have an interest in kidney cancer.

Member wins prize at WHO World Health Assembly

Members
Congratulations to the Thalassaemia International Federation, awarded The Dr LEE Jong-Wook Memorial Prize for Public Health at the World Health Assembly!

Apply to represent IAPO at WHO Regional Committees

Members
As an organization with special consultative status at the World Health Organization (WHO), IAPO is delighted to invite applications from members for support to attend Regional Committee Meetings in autumn 2015.

60 Seconds with... Matthias Wienold, The European AIDS Treatment Group

Members
Our featured member of the month is Matthias Wienold from the European AIDS Treatment Group. Matthias is joining our Governing Board in August and answered a few questions for us.

60 Seconds with... Jolanta Bilińska, Patient Safety Foundation

Members
Each month we will be interviewing an IAPO member in six short questions. They will be featured in our newsletter and the website. Our featured member of the month is Jolanta Bilińska from the Polish Patients Safety Foundation. Jolanta begins as the new IAPO Chair in August and answered a few questions for us.

60 Seconds with... Penney Cowan, the American Chronic Pain Association

Members
Each month we will be interviewing an IAPO member in six short questions. They will be featured in our newsletter and the website. Our featured member of the month is Penney Cowan from American Chronic Pain Association ​. Penney answered a few questions for us.

Raising awareness through football

Members
IAPO member CHEN Patient Fertility Association, based in Israel, recently held a football tournament to raise awareness about infertility.

Announcing new board members and an AGM 2015 recap

Members
We are pleased to announce our new Governing Board members and recap on our Annual General Meeting held in May 2015.

Success! Campaigning to change Uganda’s health budget

Members
Success! The National Organization of People Living with Hepatitis B campaigns for the inclusion of Hepatitis B in Uganda’s health budget.

60 seconds with... Gertrude Buttigieg, Malta Health Network

Members
Our featured member of the month is Gertrude Buttigieg from Malta Health Network​. Gertrude answered a few questions for us.

Cuatro razones para ser un miembro de IAPO

Members
Cuatro razones para ser un miembro de IAPO.

60 Segundos con… Emiko Tsuji, Club del Hospital Universitario de la Ciudad de Osaka para el Apoyo de los Pacientes con Cáncer

Members
60 Segundos con… Emiko Tsuji, Club del Hospital Universitario de la Ciudad de Osaka para el Apoyo de los Pacientes con Cáncer

La Presidenta de Chile apoya el financiamiento de tratamiento para Enfermedades de Alto Costo

Members
Miembros de IAPO en Chile han participado en la introducción de una nueva ley para cubrir el tratamiento de Enfermedades de Alto Costo.​

60 segundos con... Evelyn Azucena de Aguirre, Asociacion Psoriasis Nueva Vida El Salvador

Members
Cada mes se entrevista a un miembro de IAPO en seis preguntas cortas. Serán presentadas en nuestro boletín y en la página web. Nuestro miembro destacados del mes es Evelyn Azucena de Aguirre, presidente de la asociación Psoriasis Nueva Vida El Salvador.

60 Seconds with...Orajitt Bumrungskulswat, Heart to Heart Foundation

Members
Each month we will be interviewing an IAPO member in six short questions. They will be featured in our newsletter and the website. Our featured member of the month is Orajitt Bumrungskulswat, Assistant Secretary General at the Heart to Heart Foundation. Orajitt answered a few questions for us.

IAPO member CHEN advocates for patients at Government meeting

Members
More than 75 delegates from patients associations (including IAPO member CHEN - Patient Fertility Association), health funds and hospitals gathered in the Knesset for a day of patients' rights with members of Knesset (MK).

IAPO member Polish Diabetes Association wins award

Members
IAPO member the Polish Diabetes Association was presented with the 2014 International Diabetes Federation Europe Prize in Diabetes last month.

60 Seconds with...Dr Petra Wilson, IDF

Members
Each month we will be interviewing an IAPO member in six short questions. They will be featured in our newsletter and the website. Our featured member of the month is Dr Petra Wilson, Chief Executive Officer of International Diabetes Federation. Petra answered a few questions for us. 1. Describe...

Alzheimer’s Disease International launch World Alzheimer Report 2014

Members
“Betty Davis said famously ‘old age is no place for sissies’ and wow, was she correct.” Angela Rippon’s opening remarks at the launch of the World Alzheimer Report 2014 by IAPO member Alzheimer’s Disease International ( ADI ) set the tone for a detailed discussion on the implications and...

60 Seconds with...Andrew Spiegel, GCCA

Members
Each month we will be interviewing an IAPO member in six short questions. Our featured member of the month is Andrew Spiegel, the Executive Director of The Global Colon Cancer Association (GCCA).

60 Seconds with... Dr Sunil Prakash, Consumers' Forum

Members
Each month we will be interviewing an IAPO member in six short questions. Our featured member of the month is Dr Sunil Prakash, who works with Consumers' Forum in India.

60 Seconds with... Joshua Wamboga, TASO

Members
Each month we will be interviewing an IAPO member in six short questions. Our featured member of the month is Joshua Wamboga, who works with The AIDS Support Organization (TASO) in Uganda. Joshua is joining our Governing Board this month, and took some time out of his busy schedule to answer a few questions.