The global community of persons living with a rare disease, led by RDI, EURORDIS and the NGO Committee for Rare Diseases, is calling for a UN Resolution that recognises the complex challenges faced by persons living with a rare disease, and promotes full participation and inclusion in society of all people.
Over 300 million people worldwide live with one of over 6 000 identified rare diseases. Rare diseases are often chronic, complex, heavily disabling and life threatening.
Persons living with a rare disease (PLWRD) and their families face life challenges” that touch on every aspect of a human life
Challenges include integration and inclusion in education systems that are often ill-adapted, challenges accessing stable work, greater risk of financial hardship, difficulty accessing appropriate healthcare, as well as stigma and discrimination, and increased gender inequity (especially felt by women and mothers who are often primary caregivers, and experience greater stigmatisation).
The challenges of this global community are tied to the aims of the Sustainable Development Goal (SDGs), beyond healthcare, and demand the attention of the United Nations as whole.
Sustainable Development Goals advanced by addressing the challenges of PLWRD and their families:
Brazil, Spain and Qatar are the Core Group of UN Member States championing the adoption of the UN General Assembly Resolution in 2021. The group of supportive Member States is growing, and includes countries in Africa, Asia and Europe. We urge all 193 Member States of the UN General Assembly to join the call and adopt the UN Resolution this year.
Every voice matters ! Free, downloadable and updated communication and advocacy tools. Call for a UN Resolution in 2021.
Use the hashtag #Resolution4Rare and modify letter templates to reach out to national policy makers and UN Representatives.
What would you like the countries of the United Nations and governments around the world to know about life with a rare disease? Write your message to the United Nations and help policies makers understand the reality of living with a rare disease and the challenges, hopes and aspirations of our global community.
UN Regional Group Meetings – A Resolution on Persons Living with a Rare Disease and their Families, 7-9 September 2021
A messages from the global rare disease community open the presentation on the call for a UN Resolution to Addressing the Challenges of Persons Living with Rare Diseases and their Families.
00:00 Testimonies: Persons Living with a Rare Disease and their Families
8:53 Civil Society Partners and facts about rare diseases
10:31 Why a UN Resolution on Persons Living with a Rare Disease
22:49 Call to Action
On the road towards COVID-19 recovery and delivery of the SDGs: “Addressing the challenges of persons living with a rare disease as a sustainable development, human rights, and equity priority”.
Organized on the margins of the HLPF, the side-event was co-hosted by Brazil, Spain and Qatar – the Core Group of Member States promoting the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families – together with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS.