The ground-breaking Resolution was adopted by all 193 UN Member States and is the first UN document to recognise the specific challenges of people living with a rare condition and their families. The Resolution goes beyond health and focuses on the importance of non-discrimination – it affirms that addressing the needs of the rare community is essential to advancing the UN’s 2030 Agenda for Sustainable Development, which includes access to education and decent work, reducing poverty, tackling gender inequality, and supporting the inclusion of Persons Living with a Rare Disease in society.
IMPACT OF THE RESOLUTION
- Empower the global rare disease community – a powerful text at the international level to support rare disease groups advocating at the national level.
- Encourage the development of national strategies and plans – an international framework to stimulate the development of national responses and policies.
- Elevate PLWRD and rare diseases within the UN – a form of “soft law” binding on the UN secretariat, as well as its budget and programmes. It enables greater integration of rare diseases in the agenda, actions and priorities of the UN.
- Advance the achievement of the 2030 Agenda – the UN recognises that addressing the needs of PLWRD advances its commitment to “leave no one behind” and contributes to the achievement of the SDGs
- Promote international collaborations – a text promoting global initiatives addressing the complex challenges of PLWRD
ADD YOUR VOICE CALLING FOR FULL IMPLEMENTATION of UN RESOLUTION
Every voice matters! Add yours to the call for full implementation of recommendation of the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”
CAMPAIGN CALLING FOR SUPPORT FOR UN #Resolution4Rare
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..