As reported in Charcot-Marie Tooth News
; this year, Eurordis has kicked off a campaign to make sure those with rare diseases don’t get left behind in the coming century. Small patient groups can make it hard to get needs met, with fragmented disease efforts not creating enough noise to get action individually.
Eurordis, joining patient groups from 73 countries, wants to promote policy that would help improve their quality of life. They wanted to show how that while there may be 7,000 unique disease groups, the 30 million people in Europe living with rare diseases are brought together by common needs. Compiling recommendations from surveys and experts, they’ve come with an agenda with policies that address issues that too often fall between the cracks.
Their campaign, Rare 2030 Action, is joining together the many voices of the community, asking them to share their stories on social media and to reach out to their Parliamentary representation. They’re hoping the noise will turn up the heat on the European Commission to take legislative action.
Rare 2030 Action
The campaign is spreading on social media with the hashtag #30millionswhy, in an acknowledgment of the very many people living with uncommon situations.
Eurordis is also encouraging patients and caregivers to voice their needs directly to the president of the European Commission, Ursula von Der Leyen, through an online form. They want the community members to explain the way the system doesn’t work for them to illuminate how and why Europe needs to take action in the coming decade. They’re also inviting patients to campaign directly to their Member of the European Parliament (MEP).
The Rare 2030 Foresight Study
Eurordis is hoping to see their greater governmental union work to adopt some of the recommendations necessary to improve the lives of patients with rare diseases across Europe.
They accrued a list of the top priorities from their findings from the Rare 2030 Foresight Study. The study was conceived by the European Parliament with monetary support from the European Commission Pilot Project and Preparatory Actions Programme and ran over two years. It included advice from 250 rare disease experts, who brought together the many faces of the experience, to create a list of recommendations for the commission that could improve the wellbeing of rare patients.
From their findings, the experts created a set of recommendations that revolved around creating more universal policies to encourage investment in rare drugs and create policy plans dedicated to rare diseases, to get that perspective on relevant policy regarding healthcare and social welfare.
They also recommended a larger policy framework that included all of Europe. This would be bills that give incentives to promote investment in rare disease treatment, and a concrete set of legislation to coexist with current policy that focuses on rare needs in healthcare, social welfare, and research.
They hope you, me, all of us will take part. On their webpage, Eurordis writes, “We all have a role to play: as a person living with or caring for someone with a rare disease, as their friends and family, as a patient advocate, as a doctor, as a healthcare professional, as a policymaker, as someone working in the rare disease field.”