News Archive: 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...
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, 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...
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...
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...
On 30 th 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...
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...
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...
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...
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...
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...
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...
Overview of GPC2018 Sessions The 8 th 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...
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...
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...
The Rheumatoid Arthritis Foundation of Panama, together with the Panamanian Association for the Prevention of Sickle Cell Anaemia and the Panama Psoriasis Foundation, came together to carry out activities in commemoration of Patient Solidarity Day. These three Panamanian patient organizations all...
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...
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...
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...
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...
This month’s policy briefing focuses on pain management. IAPO’s Declaration on Patient-Centred Healthcare outlines that, despite representing patients from many different disease backgrounds, the focus must be on addressing the common needs of all patient communities, regardless of their disease area.
The 2017 Patient Solidarity Day theme is: Patient empowerment.
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...
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.
On 4 th - 5 th 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),...
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...
On 4 th – 5 th July, IAPO’s member organizations in Africa will be coming together to address the next steps forward for joined-up healthcare across the continent.
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...
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​...
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...
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 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 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.
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...
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...
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...
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...
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 (...
IAPO’s 2017 member engagement and empowerment plan will be centred on four main thematic areas: Patient-centred healthcare, Access, Accountability and Transparency, and the Patient Solidarity Day theme (to be decided by our members in the forthcoming months). This policy document kicks off our...
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...
We are asking for everyone within IAPO’s network to send us suggested topics for the Patient Solidarity Day 2017 theme.
2016 was a great year for IAPO and our community of members and collaborators! In April 2016, we held the 7th Global Patient Congress which was attended by 136 delegates from different backgrounds. In December 2016, patients from all over the world came together to celebrate Patient Solidarity Day...
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.
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.
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...
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...
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...
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...
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’...
Reporting by Kawaldip Sehmi, IAPO CEO, from the FIFARMA strategy meeting in Panama City A good start-invite the patients to observe! Like most of us, you are probably now searching the Internet for the acronym FIFARMA. You will find very little about it! The Federacion Latinoamericana de la...
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...
Innovation improving sustainable access: boosting your reach and impact.
This August, Migdalia Denis, from the Pulmonary Hypertension Latin Society, will join the IAPO Governing Board.
The Medtronic Foundation is now accepting applications for the Bakken Invitation Award, an international award celebrating the philanthropic power of patients.
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.
IAPO members represent patients around the world and often deal with challenges such as funding cuts, changes in administrations and wider economic uncertainty.
We will be welcoming Hussain Jafri, Secretary General for Alzheimer's Pakistan, to our Governing Board in August 2016.
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.
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.
The Ministry of Health for Argentina has recently passed a law in support of Universal Health Coverage. Isabel Rolando, President of Concebir , explores what this means for patients in Argentina today.​
Bladder problems are not an inevitable part of aging. Find out more during World Continence Awareness Week, 20-26 June 2016.
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.
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.
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.
At the Global Patients Congress, five IAPO members were elected to the Governing Board.
10 March 2016 will see the eleventh World Kidney Day take place. This year’s theme is ‘Kidney Disease & Children. Act Early to Prevent It!’ The day will focus on improving education, facilitating early detection and ensuring that throughout an individual’s life – starting at birth – everyone is well equipped to combat and manage kidney disease.
From 4-6 February 2016, EFCCA (the European Crohn´s and Ulcerative Colitis Associations) together with GAfPA (Global Alliance for Patient Access), organised an advocacy workshop on patient safety in Barcelona that gathered over 60 patient representatives from a wide range of immune modulate disease groups and other organizations .
Excerpts from the 'Presidential New Year Message 2016', by Gabriel Ivbijaro MBE JP, President of the World Federation for Mental Health.
IAPO members CHAIN (the Community Health and Information Network) and UAPO (the Uganda Alliance of Patient Organizations) worked with the WHO (World Health Organization) to hold Uganda’s first Patients for Patient Safety workshop in November 2015.
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.
We interviewed Anders Olauson, President of the European Patients Forum, about his organization, patient-centred healthcare and why he became involved in patients' rights. ​
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 .
In August, following our Regional Meeting in Panama City, we were delighted to visit one of IAPO’s local members, Fundación Psoriasis de Panamá (FPP) , and find out about their work.
We are really pleased to launch our new Membership Guide!
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.
The International Kidney Cancer Coalition is actively looking to reach out and connect with patient organizations who have an interest in kidney cancer.
Congratulations to the Thalassaemia International Federation, awarded The Dr LEE Jong-Wook Memorial Prize for Public Health at the World Health Assembly!
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.
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.
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.
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.
IAPO member CHEN Patient Fertility Association, based in Israel, recently held a football tournament to raise awareness about infertility.
We are pleased to announce our new Governing Board members and recap on our Annual General Meeting held in May 2015.
Success! The National Organization of People Living with Hepatitis B campaigns for the inclusion of Hepatitis B in Uganda’s health budget.
Our featured member of the month is Gertrude Buttigieg from Malta Health Network​. Gertrude answered a few questions for us.
IAPO members in Chile have been involved in the introduction of a new law to cover the treatment of high cost diseases.
Each month we will be interviewing an IAPO member in six short questions. Our member of the month is Evelyn Azucena de Aguirre, President of the Asociacion Psoriasis Nueva Vida El Salvador.
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.
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 the Polish Diabetes Association was presented with the 2014 International Diabetes Federation Europe Prize in Diabetes last month.
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...
“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...
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).
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.
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.