Patient organisation round-up: May 2020

Patient organisations across Europe have been working hard to provide COVID-19 information for patients with specific underlying lung conditions and have been supporting healthcare on the frontline.

Image: Healthcare workers in Spain wearing protective screens donated by the Foundation Against Pulmonary Hypertension


Fundación contra la Hipertensión Pulmonar (FCHP) gives back to healthcare workers on the frontline

In order to ‘give back’ to healthcare professionals who take care of people with pulmonary hypertension (PH), members of the foundation against pulmonary hypertension (FCHP) have been working with a 3D designer to donate protective screens to healthcare workers in hospitals across multiple large cities in Spain. Find out more.


Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) launches helpline and donates protective equipment to healthcare workers

The Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) have established a helpline so that patients, especially newly diagnosed ones, can talk to a more ‘experienced’ patient about their condition.

PAHSSc also reached out to their own doctors to see if they needed any help. They raised funds to send protective equipment to healthcare workers in different state hospitals.


Asociación de Pacientes de EPOC (APEPOC) starts COVID-19 campaign and urges Minister of Health to provide tests for COPD patients

The Spanish national COPD patient association (APEPOC) started a specific COVID-19 campaign #Covid19yEPOC for COPD patients. They are receiving many messages of encouragement from all parts of Spain.

APEPOC also asked the Minister of Health for urgent access to COVID-19 tests for all COPD patients and families as they are people at higher risk if they become infected.

Read the press release: APEPOC requires COVID-19 tests for COPD patients


Asthma UK and British Lung Foundation partnership launches Post-COVID HUB

The Asthma UK and British Lung Foundation partnership have produced a Post-COVID HUB for:

  • People with post-COVID breathing difficulties and their family members and carers to get reliable information and dedicated support for physical and mental health.
  • Researchers to get information on emerging evidence, research efforts and funding opportunities related to post-COVID respiratory complications.
  • Healthcare professionals to get the latest guidelines on supporting people with post-COVID breathlessness.
  • Policy-makers and commissioners to get the latest information about the long-term respiratory impacts of COVID-19, to inform meaningful policy and service change.


Members of Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER) take part in webinar and news interview

The Spanish national federation of respiratory patient organisations (FENAER) took part in a webinar about COVID-19. During the webinar, a pulmonologist answered questions from respiratory patients about the situation of high-risk groups during the pandemic. Find out more and watch the webinar.

The president of “Sevilla Respira”, one of FENAER’s support groups, was interviewed on the Spanish news channel, Canal Sur TV, about the (mis-)use of face masks that have been distributed to passengers using public transport. Watch the interview.


PCD Support shares messages of encouragement from patients during lockdown

The Primary Ciliary Dyskinesia (PCD) Support Group UK are sharing messages of encouragement during the COVID-19 lockdown. Patients of all ages are sending photos of their favourite activities to do at home, including how they are keeping fit. Activities include board games, puzzles and art.

See more on their Twitter and Facebook.


New President of Association Pour la Fibrose Pulmonaire Idiopathique (APEFPI)

Françoise Enjalran, founder of the French association of idiopathic pulmonary fibrosis (APEFPI) in 2011, has handed over the position of head of APEFPI to Jean-Michel Fourrier.
“It was with great emotion and regret that I made this decision, but reason must dominate feelings,”
explained Françoise in a letter addressed to all members of APEFPI. “At more than 80 years old, I have to face the facts: it is no longer reasonable to continue to take on this exciting but time-consuming task; my mind is working fine, but the body tells me to stop. I am sure that the new team will continue to do what I have undertaken, and which, to date, developed remarkably. We now harvest what we have sown through 10 years. In recent years, the results of our actions have been very positive.”
Jean-Michel Fourrier, the successor of Françoise, retired from active working-life in 2019 two years after his IPF diagnosis. Jean-Michel participated in the development of APEFPI by joining in many sessions of the IPF “Tour de France” for patients and caregivers. He took the initiative to create APEFPI’s regional delegations and support groups. Once the COVID-19 pandemic is over, they will establish these delegations and groups. 


Aspergillosis Trust creates COVID-19 section on website

The Aspergillosis Trust has created a page on their website dedicated to COVID-19 information and resources. The information is useful for people with aspergillosis as well as the wider public. It includes tips on how to look after yourself and protect others. This covers exercise including links to some videos, healthy eating, grocery shopping and mental health and wellbeing. Visit the page.

There are also new patient stories, which show how patients have been dealing with shielding during the COVID-19 pandemic.


Alpha1 Deutschland sends frequent newsletter during COVID-19 pandemic

Alpha-1 Germany is sending frequent newsletters which include lots of information about COVID-19 in relation to people living with Alpha-1 antitrypsin deficiency.

Read their newsletters.