Rare Disease Day 2024: Make your voice heard!
One month from now, on 29 February, people around the world will gather for Rare Disease Day 2024. Coordinated by EURORDIS, this yearly event is a key moment when all members of the rare disease community can make their voices heard and add momentum to important advocacy work.
Groups around the world are organising events for their local rare disease communities. To learn more about events happening near you, take a look at the ‘Events Near You’ tab in your local language on the Rare Disease Day website.
To kick off the festivities, EURORDIS is hosting their annual Black Pearl Awards on 20 February in Brussels, Belgium and online. These awards are meant to honour key actors in the rare disease field who are driving positive change, with awardees being announced weekly leading up to the ceremony. Since the last edition of OrphaNews, the following awardees were named:
- Adéla Odrihocká, Young Patient Advocate Award: Adéla is a translator and interpreter specialising in healthcare, who has demonstrated outstanding involvement in national and international rare disease projects and advocacy work, with a particular focus on gender biases in healthcare, policy, workplace inclusion, and the social aspects of living with a rare disease.
- Alain Coheur, Policy Maker Award: Alain Coheur is the Director of European and International Affairs at Solidaris Mutualité in Belgium, and is actively involved in organisations such as the European Economic and Social Committee (EESC). This award recognises his contributions to advancing EU-level rare disease strategy through his work on the EESC.
- Dr José Alain-Sahel, Scientific Award: Dr Sahel is a clinician-scientist working on vision restoration in currently untreatable retinal diseases. The Scientific Award recognizes his pioneering research efforts and substantial contribution to knowledge on rare retinal diseases and inherited retinal degenerations.
- “Never Stop Moving” by Proyecto Alpha, Media Award: Proyecto Alpha is a Spanish non-profit that represents and assists people living with muscular dystrophy due to Sarcoglycan deficiency and their families. They have been awarded the Media Award for their powerful documentary, Never Stop Moving, which depicts the daily struggles of individuals living with muscular dystrophy. Watch the trailer here.
- DEBRA International, Members Award: DEBRA International is the international alliance of DEBRA and other epidermolysis bullosa (EB) advocacy groups. This award recognizes their commitment to people living with rare diseases during crises such as the war in Ukraine, and disaster-affected regions in Turkey and Syria; and the awareness these efforts have raised of rare diseases in the realm of humanitarian aid.
- Poznan Supercomputing and Networking Center, Company Awards for Health Technology: The Poznan Supercomputing and Networking Center has received this award for their work coordinating the INSENSION project, which developed an assistive technology platform to empower severely disabled people to communicate non-verbally.
- Sanofi, Company Award for Innovation: Sanofi is being honoured with this award due to their pioneering efforts to develop diagnostic and treatment options for rare diseases with no prior treatment options.
Individual Black Pearl Awardees to date (via EURORDIS)
Until 31 January, submissions are also open for the EURORDIS Photo Award. This award, open to the public, is an opportunity to share a photo which expresses what it means to live with a rare disease. Once finalists are selected, online voting will open on 7 February, with the winner being announced the night of the awards ceremony.
