EURORDIS open letter to policy makers: Recommendations to protect people living with a rare disease during the COVID-19 pandemic

8 April 2020

EURORDIS-Rare Diseases Europe praises the actions, efforts and dedication of all health and social care professionals, as well policy makers at EU, national and regional level, who are facing difficult decisions and exhaustion on the frontline of this COVID-19 pandemic. 

We know that no policy maker or public health authority wishes to leave anyone behind during this pandemic. However, the 30 million people in Europe and 300 million worldwide living with a rare disease are among the most vulnerable populations during this crisis. 

We would therefore like to bring to their urgent attention the concerns and needs of people living with a rare disease, their families and carers during the current crisis. 

Through this open letter, we implore policy makers and authorities in Europe and around the world to take action to protect people living with a rare disease from becoming even more vulnerable during this crisis in line with the recommendations set out further below.

 

Rare diseases, often chronic, highly complex, progressive and severely disabling, generate specific care needs. The effect of COVID-19 on healthcare and social systems is immense, and directly impacts the care that people living with a rare disease receive during this stressful time, as well as their socio-economic status, education and employment.

Below we set out how COVID-19 impacts the lives of people living with a rare disease in seven areas listed below and issue recommendations in each area on What policy makers can do to support the rare disease community in the weeks and months to come.

This is a time for upholding the guiding principles of solidarity, equity and cooperation. It is a time to see through the promise to ‘leave no one behind’ and achieve universal health coverage for all. 

The crisis proves the importance of strong, well-funded, public health and welfare systems that address in particular the needs of the most vulnerable and also demonstrates the added value of coordination in public health policy and collaboration across borders within the EU and beyond.

1. Access to health care

 

⇩ 2. Screening and diagnosis of rare diseases

 

3. Holistic care, including social services and social support

 

4. Everyday life and work conditions

 

⇩ 5. Safe use of medicines

 

⇩ 6. Development of and access to medicines

 

7. Research on rare diseases

 

EURORDIS, as a member of both organisations, supports the communications on COVID-19 released by the European Patients Forum (EPF) and the European Disability Forum (EDF), and aims with this open letter to highlight the specific challenges and needs of the particularly vulnerable community of people living with a rare disease.

 


Download a PDF version of this open letter

 

This open letter has also been translated into Italian.

 

Page created: 26/03/2020
Page last updated: 21/04/2020
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases