Join the global community of people living with rare conditions, led by Rare Diseases International, EURORDIS – Rare Diseases Europe and the NGO Committee for Rare Diseases, in calling for a UN Resolution that recognises the complex challenges faced by people living with rare condition, and promotes full participation and inclusion of all people in society.
Every voice matters! Add yours to the call for a UN Resolution in 2021. Use the hashtag #Resolution4Rare. Free, downloadable and updated communication tools. Don’t forget to tag us @RareDiseasesIE in your posts. Modify letter templates to reach out to national and EU policy makers and UN Representatives.
Are you living with a rare condition? What would you like the countries of the United Nations and governments around the world to know about life with a rare condition? Write your message to the United Nations and help policy makers understand the reality of living with a rare condition and the challenges, hopes and aspirations of our global community.
Patient organisations, civil society groups, community groups – join RDI as we press for Ireland to adopt the UN Resolution for People Living with Rare Diseases. Please send your organisation name and logo to RDI (firstname.lastname@example.org) by Thurs, Sept 23, and we will include you as a signatory to our letter. Alternatively send your own letter.
Persons living with a rare disease (PLWRD) and their families face challenges that touch every aspect of daily life. Challenges include integration and inclusion in education systems that are often ill-adapted, challenges accessing stable employment, greater risk of financial hardship, difficulty accessing housing, difficulty accessing appropriate and adequate healthcare and support, as well as stigma and discrimination, and increased gender inequity (especially felt by women and mothers who are often the primary caregivers). The challenges of the global rare disease community go beyond just healthcare; they are tied to many of the UN Sustainable Development Goal (SDGs) and demand the attention of the United Nations as whole.