Improve visibility of patients living with a rare disease

This complete program focused on patients living with a rare disease is carried out in collaboration with Eurordis, the european non-profit alliance of 984 rare disease patient organisations from 74 countries.

Rare Disease Day Campaign Communication

Rare Disease Day is the globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and 62 national alliance patient organization partners working towards equity in social opportunity, healthcare, and access to therapies for people living with a rare disease. Over the last 13 years, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, multicultural, and multi-lingual – but united in purpose.

Fondation Ipsen will seed a fund in the amount of €12,000 each year for three years, to help resource Rare Disease Day national alliance partners for delivering the Rare Disease Day campaign in their countries/regions. Priority would be given to newly-joining and less mature national alliance partners to help make possible a range of initiatives that we know are successful in building awareness.

 

 

Rare Disease Schools Toolkit

Raising awareness of rare diseases among young people is so critical, as rare diseases disproportionately impact children and are often little understood by patients, peers, and educators alike. EURORDIS intends to lead on developing a classroom curriculum and toolkit that helps raise awareness in schools for rare diseases, and fosters brainstorming among students about ways their school can be more inclusive and accommodating for people living with a rare disease. This curriculum would be based around a visual art class, as this links with the Rare Disease Day theme of “Share your colors” and provides opportunities for students to share their work, both within their schools and via the Rare Disease Day website and social media channels.

 

Strengthening the Ecosystem for Rare Disease Patient Health Data

This programme seeks to strengthen effective two-way communication channels between rare disease patients and the many actors shaping the health data ecosystem. As these actors better understand the unique perspectives and needs of rare disease patients, and as rare disease patients build confidence in and understanding of how their health data is used, we can help facilitate a step change in rare disease patient participation and engagement with research design.

 

Over a 3-year period commencing in 2022, EURORDIS aims to:

• Systematically capture rare disease patients’ perspectives on the topic of health data sharing, use, and re-use
• Analyse and leverage these perspectives to meaningfully inform policy on health data usage as it relates to rare disease patients, first at the national and European levels and subsequently at the international level
• Build the comprehension, capacity and engagement of rare disease patient organizations and people living with a rare disease for navigating data governance structures and networks.