This page provides a summary of the latest COVID-19 response initiatives by our members and partners around the world. It's an opportunity to share learning and insight with the rest of the IAPO network and the wider global health community.

 

ABRAF - Brazilian Pulmonary Hypertension Association (IAPO Member)

ABRAF is holding daily online workshops for patients and caregivers to help support their physical and mental health during the pandemic. For each day of the week, there is a different workshop, such as singing, yoga or exercises for transplanted patients. On social media, they are holding weekly lives to provide patients with information on their condition in the context of COVID-19, as well as to clarify any questions patients may have. By the end of April, ABRAF will launch a survey to understand the psychological effect of COVID-19 on patients and caregivers.

Click here to read ABRAF's article for the series 'IAPO Members stories on COVID-19'.

 

Canadian Association of Psoriasis Patients - CAPP

CAPP has a COVID-19 resource page that directs visitors to the Canadian Skin Patient Alliance webpage for FAQs and other resources. It also contains information about the PsoProtect global registry for psoriasis, of which it is a partner, and the newest initiative PsoProtectMe, which is a patient-facing program.

 

Canadian Skin Patient Alliance - CSPA (IAPO Member)

CSPA has a COVID-19 resource page where they posted FAQs and responses from their Medical Advisory Board; an overview of changes to public (government) drug plans across Canada as a result of COVID-19 (regularly updated); resources from Affiliate Members and other organizations in Canada that represent patients living with a specific skin disorder such as psoriasis, scleroderma, melanoma and eczema; a link to global registries of skin disorder patients with COVID-19; and guidance from public health agencies about how to manage the impacts of the pandemic.

Click here to read CSPA's article for the series 'IAPO Members stories on COVID-19'.

 

CHEN - Patient Fertility Association (IAPO Member)

CHEN has provided guidance to their patients recommending that they do not start any new treatments until the pandemic is brought under control. In the meantime, they are providing emotional support via telephone and other digital means. CHEN has also appealed to the Ministry of Health in Israel and took legal action, with the support of a patients’ rights organization, to re-start fertility treatments for more than 5.000 of their patients. The treatments were successfully resumed in the beginning of May. Via another appeal to the Ministry of Health, CHEN guaranteed that all treatment payments would be sorted by June. 

Click here to read CHEN's article for the series 'IAPO Members stories on COVID-19'.

 

Consumer Online Foundation - COF (IAPO Member)

COF, in collaboration with other organizations, organised the International Seminar on the Role of AYUSH and COVID-19 pandemic 2020, a 6 day event to discuss the role of indigenous alternative medicine systems in India (AYUSH - Ayurveda, Yoga & Naturopathy, Unani, Siddha and Homoeopathy) in the fight against coronavirus and how to access AYUSH to lessen morbidity and mortality in India.

Click here to read COF's article for the series 'IAPO Members stories on COVID-19'.

 

CUI.D.AR - Association for the Care of Diabetes in Argentina (IAPO Member)

CUI.D.AR developed a website with comprehensive information for people living with diabetes with the aim of empowering them to take the necessary steps to protect their health and minimize the impact of the pandemic on their lives. They have also launched a public consultation on the current situation of access to insulin and supplies in Argentina with the aim of making claims to health providers. All content is in Spanish and will be updated periodically.

Click here to read CUI.D.AR's article for the series 'IAPO Members stories on COVID-19'.

 

European Federation of Crohn's & Ulcerative Colitis Associations - EFCCA (IAPO Member)

EFCCA has carried out a survey with 3815 patients with Inflammatory Bowel Disease (IBD) to better understand their concerns and fears in the context of the pandemic. It aimed at collecting general information on how the pandemic is affecting the IBD patient community and get a general picture which will help EFCCA to better support people with IBD. The survey has been co-designed with Pr. Silvio Danese (Head of the IBD Center at Humanitas University Hospital in Milan) and was translated to 11 languages. To read the full results of the survey, please click here.

Click here to read EFCCA's article for the series 'IAPO Members stories on COVID-19'.

 

European Lung Foundation - ELF (IAPO Member)

ELF is taking and answering respiratory related questions through speaking with infectious diseases expert from the European Respiratory Society and intensive care specialist. Read more.

 

European Migraine & Headache Alliance - EMHA (IAPO Member)

EMHA has created a communication plan to support patients with migraine including infographics and the publication of a series of recommendations on social media under the hashtag #TakeCareAtHome. From May to December 2020, they will hold 20 live webinars in different languages as part of the “EMHA Together talks. Talks about Migraine & Headache”. The webinars will have a local neurologist talking about the impact of COVID-19 on migraine patients and addressing questions from patients. In collaboration with the European Headache Federation, they have also created a set of infographics to inform about the challenges of COVID-19 in Europe and its impact on patients.

 

FindMeCure Foundation (IAPO Member)

They conducted a survey with all patients applying for clinical trials via their platform during the pandemic as they were concerned about the impact of COVID-19 on clinical trials and more specifically patient enrolment. Surprisingly, the survey showed that 80% of the patients are motivated to take part in research even if they have to wait. To read the survey analysis and results, please click here.

Click here to read FindMeCure Foundation's article for the series 'IAPO Members stories on COVID-19'.

 

Fondazione The Bridge - FTB (IAPO Member)

FTB produced and released two surveys in Italy to investigate different issues during the pandemic. The first one collected patients’ associations perceptions, needs and worries caused by the pandemic. The second aimed at the general public to understand how they perceived the quality/capacity of the national/regional healthcare services during the crisis. Click here to read the second survey analysis. Their research will continue in order to tackle important COVID-19 related issues and support the design of more efficient health policies in Italy. 

Click here to read FTB's article for the series 'IAPO Members stories on COVID-19'.

 

Heart for Heart Foundation (IAPO Member)

HHF held an activity to support disability groups (HHF members) from several provinces in Thailand with 100 sets of medical and nursing equipment and consumer goods including home visits to bedridden persons.

 

International Alliance of Dermatology Patient Organizations - IADPO, also know as GlobalSkin (IAPO Member)

Supporting dermatology patient organizations is paramount to GlobalSkin. During these challenging times of the COVID-19 pandemic, GlobalSkin has collaborated with experts in various fields of study including behavioural medicine, dermatology and pediatric dermatology to offer their Members a series of COVID-19 Virtual Townhalls. Information shared during these webinars has ranged from the impacts of COVID-19 on patients with autoimmune diseases to the reporting on the latest COVID-19 related manifestations in children. GlobalSkin has a dedicated page on their website: COVID-19: Resources for Dermatology Patient Organizations, where they have an extensive list of resources related to the pandemic gathered from their Member community, dermatological associations, and the WHO. Learn more about GlobalSkin and view the COVID resources here

 

International Foundation for Autoimmune & Autoinflammatory Arthritis - IF AiArthritis (IAPO Member)

IF AiArthritis created a COVID-19 & AiArthritis section on their website with links to resources and websites from patient organizations, governments, and rheumatology associations worldwide, as well as access to the episodes of the COVID-19 Special Series on their AiArthritis Voices 360. They have also created a Facebook group to promote discussion on the topic and share resources. Read more.

 

International Patient Organisation for Primary Immunodeficiencies - IPOPI (IAPO Member)

IPOPI is holding calls with their members and a medical guest every other week to answer their questions and address any concerns. Based on these, FAQs on Primary immunodeficiencies and COVID-19 are composed and featured in a specific area of their website. Read more.

Click here to read IPOPI's article for the series 'IAPO Members stories on COVID-19'.

 

Irish Patients Association - IPA (IAPO Member)

IPA advocated for the development of a pandemic ethics code in Ireland similar to WHO's and is part of the Department of Health's Pandemic Ethics Advisory Group. Among the Group's outputs are the Ethical framework for decision-making in a pandemic, Ethical considerations relating to critical care in the context of COVID-19 and Ethical considerations for PPE use by health care workers in a pandemic.

 

Lupus Alert - LA (IAPO Member)

In Mauritius, LA advised lupus patients to have a 90-day supply of any medication to ensure their access to treatment, even in case of self-isolation or quarantine. To ensure that patients take extra care and precautions with their health, they hold regular calls with them. With regards to Hydroxychloroquine, Lupus Alert ensured that local hospitals had a good supply and a thorough control of the drug so that only patients with a prescription could access it. In addition, they have encouraged patients following private treatments to open a file at their local hospitals if they can't buy Hydroxychloroquine at the pharmacies. LA launched a public appeal to raise awareness on the need to make Hydroxychloroquine available for people with chronic diseases. 

Click here to read Lupus Alert's article for the series 'IAPO Members stories on COVID-19'.

 

Mesothelioma.net

Pleural Mesothelioma is a rare lung cancer that is caused by exposure to a fibrous substance known as asbestos that affects the lives of thousands each year. With COVID-19 sweeping the globe, Mesothelioma.net intensified the support to those patients with a compromised respiratory systems via treatment information, 24/7 online support, financial aid, and much more. Read More.

 

Mijelon CRO (IAPO Member)

Mijelon has been donating resources and working with a patient association in Bosnia and Herzegovina (BiH) to ensure that they have access to drugs for multiple myeloma (MM) and other rare blood cancers treatments. In March, through a joint media campaign, they have raised awareness about the fact that MM drugs have not been made available to doctors and patients in BiH although they are on the 2019 WHO list of essential drugs. The Minister of Health has publicly announced that the access to these drugs will be resolved. Mijelon has a dedicated page on their website with information for patients on COVID-19 and translated WHO guidelines to be used by healthcare providers to advise patients with haematological malignancy and other specific diseases.

Click here to read Mijelom's article for the series 'IAPO Members stories on COVID-19'.

 

Multiple Sclerosis International Federation - MSIF (IAPO Member)

MSIF with its members and the MS Data Alliance launched a global data sharing initiative for COVID-19 and multiple sclerosis (MS) to achieve insights on the effect of the virus in people with MS, aiming to steer decision-making during the pandemic. They have also published global advice for people with MS and their families regarding COVID-19, which was developed with MSIF’s International Medical and Scientific Board Executive Committee and the Research Staff Network and translated into 11 languages. Read more. 

 

National Rheumatoid Arthritis Society - NRAS

NRAS is offering a set of opportunities to support patients, such as a webinar, weekly Q&A sessions on Facebook and a telephone service to connect people feeling alone and isolated.  They have created a dedicated page on their website to keep services users updated on latest developments. Read more.

 

National Voices (IAPO Member)

They launched 'Our Covid Voices', a website where people living with ongoing health conditions, disabilities and other health and care needs in the United Kingdom can tell their stories about living through the COVID-19 pandemic.

 

Patient Safety Learning 

Patient Safety Learning is investigating the impact that COVID-19 could have on patient safety and identifying systems issues that need addressing quickly in order to prevent avoidable harm. Read more.

 

Philippines Alliance of Patients’ Organizations - PAPO (IAPO Member) 

PAPO is gravely concerned about the skewed process of testing for COVID-19 that is undermining key strategies to preventing the spread of COVID-19 in the Philippines. They are calling for all in leadership to follow the Filipino Bayahinan spirit with regard to the governement policy response to protect patients and healthcare workers. Read more.

 

Psoriasis Philippines - PsorPhil (IAPO Member)

As a way of keeping in touch with their community amidst the lockdown, PsorPhil launched a 3-parts-weekly Facebook Live in May, co-hosted with Psoriasis Asia-Pacific, to address some of the issues raised by patients with psoriasis and their concerns on access to consultations, treatments, and medicines during the pandemic. The lives talked about general aspects of psoriasis, dermatology, rheumatology, as well as the emotional and mental issues surrounding the disease.

Click here to read PsorPhil's article for the series 'IAPO Members stories on COVID-19'.

 

Thalassaemia International Federation - TIF (IAPO Member)

TIF is putting together a registry to collect clinical outcome data on thalassaemia patients who have been infected with the SARS-CoV-2 virus aiming to identify factors which may contribute to either good or poor outcomes. Such knowledge is important to be known since increased precautions for vulnerable patients and more timely treatment may be necessary. Read more.

 

The European Patients Forum (EPF)

EPF has been collecting responses and testimonies from patients with chronic conditions to learn how they are being or will be affected by the COVID-19 pandemic. Read more.

 

The Fight the Fakes Campaign

Fight the Fakes has issued a statement cautioning the public against fraudulent advertising of COVID-19 medical products. There are currently no approved treatments, vaccines or cures for COVID-19 and using products that have not been approved to treat COVID-19 without medical supervision poses significant risks to patients' well-being and safety. Together with the Fight the Fakes, we are calling on the global health community to raise awareness on falsified medicines promising to treat, protect from or cure COVID-19. Read more.

 

The Health Care Consumers' Association - HCCA (IAPO Member)

HCCA Australia has developed a survey to support their organization and the Australian health system to provide the public with the information needed during the COVID-19 pandemic. Through the survey, they are researching where people are looking for information about COVID-19, whether they are finding the information they need, whether their questions are being answered, and what questions they have that are not being answered. Read more.

 

The South African Depression and Anxiety Group - SADAG (IAPO Member)

SADAG is holding daily Facebook Expert Chats from 1pm - 2pm (SAST) where the public have access to free expert advice on any questions they may have on mental health and COVID-19 during the lockdown. SADAG also created online support groups and toolkit, newsletter on the topic, and collaborated on a nationwide initiative to better support healthcare professionals during the pandemic. Read more.

 

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We are keen to share information, resources and good practice across our network during this pandemic. Make sure to visit this web page often, as we continue to regularly update it. We also invite you to share with us relevant guidance, resources, actions taken, policies implemented and data generated by emailing us at membership@iapo.org.uk.

Last updated: 20 August 2020

 

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IAPO COVID-19 Resource Hub

IAPO Members stories on COVID-19