EURORDIS letter on Covid-19 challenges for people living with rare diseases

EURORDIS has published  a new open letter to policy makers setting out the challenges people living with a rare disease are facing during the COVID-19 pandemic. The letter makes specific recommendations and on how policy makers can address challenges in these 7 areas:

1. Access to health care
2. Screening and diagnosis of rare diseases
3. Holistic care, including social services and social support
4. Daily life and work conditions
5. Safe use of medicines
6. Development of and access to medicines
7. Research on rare diseases

The letter has been developed by the EURORDIS COVID-19 Task Force, of which Genetic Alliance UK’s Jayne Spink is a member. The open letter goes into detail on the specific challenges of our rare disease community, highlighting

–       Increased isolation

–       Aggravated health risks for people living with a rare disease

–       Disruption of care over a prolonged period of time

–       The need for more inclusion in prevention measures (Personal Protective Equipment & testing)

We will be sharing the letter and promoting its recommendations widely.