NI Rare Disease Partnership
Working together for the Rare Disease community in NI
NI Rare Disease Partnership Instagram
NI Rare Disease Partnership Instagram
NI Rare Disease Partnership Facebook
NI Rare Disease Partnership Facebook
NI Rare Disease Partnership YouTube
NI Rare Disease Partnership YouTube
NI Rare Disease Partnership Website
NI Rare Disease Partnership Website
Attend the APG on Rare Disease
Attend the APG on Rare Disease
Microsoft Virtual Events Powered by Teams
Invite your MLA to join the APG on Rare disease
Invite your MLA to join the APG on Rare disease
2 files • Free
Invite your MLA to join the APG on Rare disease
We encourage members of the Rare Disease community to contact their local MLAs using the MLA Contact Sheet and accompanying Letter Template. This is an important opportunity to invite elected representatives to help shape the future of rare disease services across Northern Ireland.
Fundraising
Donate to support our work
Donate to support our work
Power of Connection – Support Group
Power of Connection – Support Group
APG Distribution List
APG Distribution List
Support Hub Contact us Form
Support Hub Contact us Form
Living with a rare disease can bring about unique challenges, and navigating the available information and support can sometimes feel overwhelming. That's where our virtual support hub for Northern Ireland comes in. Think of it as your central point of contact for all things related to your rare condition. Our dedicated team is here to provide you with personalized information, offer a listening ear, and guide you towards the resources and services that can make a real difference in your life. Whether you have questions about your diagnosis, need help finding specialist services, are looking for peer support, or simply want someone to talk to who understands, please don't hesitate to reach out – no matter what your query may be. We're here to support you every step of the way.
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