The European Parliament has announced that they will be relaunching their “Network of Parliamentary Advocates for Rare Diseases.” Its aim is to create a new policy framework which can improve care and outcomes for rare disease patients.
Reframe Rare Event
The Reframe Rare event was organized by EURORDIS-Rare Diseases Europe. Many members of European Parliament, some who have rare diagnoses themselves, attended the event. Additionally, there were many patient organizations, medical professionals, academics, and industry leaders present.
Stelios Kympouropoulos, from Greece, is a MEP who lives with Spinal Muscular Atrophy (SMA). Thanks to a new treatment which came about in 2007, SMA patients have been able to live full lives. Prior to that, 60% of patients diagnosed with the condition passed away before they turned two.
David Lega, from Sweden, is a EPP member who lives with Arthrogryposis Multiplex Congenita (AMC). This condition is a congenital disorder which results in joint contractors.
Tanjan Fajon, from Slovenia, is a MEP who lives with a Chronic Myelogenous Leukemia (CML) diagnosis. She knows firsthand how difficult it can be to receive a diagnosis, get the right treatment (hers wasn’t even available in her country), and live with a rare condition. She was at first told she would only live 7 years. She’s still fighting 20 years later.
- 32 million people have a rare disease
- 12% of patients can’t access treatment due to financial burdens
- 22% of patients can’t access treatment because it’s not available in their region
- 14% of patients can’t access treatment because there is a waiting list for their therapy
- Fewer than 5% of patients have access to a “centrally-approved” treatment
The Importance of Collaboration
Collaboration is so important because it brings together the knowledge, expertise, and resources of all countries in the EU to better serve patients. Patients should not be kept from life-altering treatments just because their own country doesn’t have the therapy. Cross-border healthcare needs to be a reality. In order for this to happen, all Member States need to work together.
You can read more about this issue and relaunched network here.