“Dear UN …”

What would you want UN policy makers and governments around the world to know about life with a rare disease? 


Participate in a campaign to raise awareness at the United Nations of the challenges faced by persons living with a rare disease and their families. Help call for the adoption of a UN Resolution in 2021, to promote greater social inclusion and protect the human rights of this community of over 300 million persons worldwide.

The UN and its member countries have committed to achieving the Sustainable Development Goals (SDGs) and developing policies that ‘leave no-one behind’. A powerful way to make them pay greater attention to persons living with a rare disease within the SDGs is by supporting the call for a UN Resolution and sharing your stories about how you experience life. 

Testimonies show the real experiences and lives behind the statistics. They help policy makers understand and empathise with the challenges individuals, caregivers and families face. They also encourage national authorities to see opportunities to respond and improve lives.


Share your testimony by completing the short form  entitled “Dear UN”, as though you were writing a letter directly to the United Nations.


Your testimony will be featured on a section of the RDI website advocating for a UN Resolution. We will also contact you for approval if we plan to include your story in future communication material or as part of a policy event.

Thank you for taking part and taking time to share your experience.