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What do you want the UN and governments around the world to know about life with a rare disease?
I am a lawyer, and at work, despite having all the necessary certificates, I was stigmatized and accused of inventing my disease. Bertilda- Colombia
It’s not just taking care of the disease, but also the house and daily expenses. Mother and child – Colombia
This led to me asking way too much from my body, pushing so hard that it left me wheelchair-bound, which could have been avoided.
Press Releases
- Press Release from The Civil Society Partners – Rare Diseases International (RDI), The NGO Committee for Rare Diseases, and EURORDIS, 16 December 2021
- Press Release from The Civil Society Partners – Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF), 7 July 2021
Media Coverage
- First-ever United Nations Resolution to Increase Visibility for the 300 Million Persons Living with a Rare Disease – Global Newswire
- General Assembly Adopts 59 Third Committee Texts – Reliefweb
- Letizia takes the floor before the United Nations on Rare Diseases – Market Research Telecast
- “Making rare diseases a human rights priority” – Health Awareness
- “Rare diseases are often ignored by public policies, the journey towards full inclusion is long” – Nonprofit
Videos
- Messages of support from UN Representatives and Governments (Brazil, Qatar, France, Thailand Spain)
- RDI Rare Disease Day Policy Event – Call for a UN Resolution, 4 March 2021
- The Rare Disease Voice at the United Nations– A complication video
- Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF), 7 July 2021
Infographics
