Join Us at the Northern Ireland Rare Disease Partnership (NIRDP) – Together We Are Stronger
Welcome! At the Northern Ireland Rare Disease Partnership (NIRDP), we are a collective voice dedicated to improving the lives of individuals and families affected by rare diseases across Northern Ireland. We believe that by working together – patients, families, healthcare professionals, researchers, and policymakers – we can create a more supportive and understanding community.
Are you passionate about making a difference in the lives of those living with rare conditions? Do you want to connect with others who understand the unique challenges and triumphs of this journey? If so, we invite you to join us!
There are many ways to get involved and contribute to our mission:
- Become a Member: By becoming a member, you add your voice to our growing community. Membership is open to individuals living with a rare disease, their families, caregivers, healthcare professionals, researchers, and anyone with an interest in supporting the rare disease community in Northern Ireland. As a member, you’ll receive regular updates, have opportunities to connect with others, and contribute to our advocacy efforts.
- Volunteer Your Time and Skills: We are always looking for enthusiastic volunteers to help us with a variety of tasks, from event support and administrative assistance to sharing your professional expertise in areas like communications, fundraising, or research. Your time and skills can make a real impact.
- Share Your Story: Your personal experiences are powerful and can help raise awareness, educate others, and connect with individuals facing similar challenges. We offer platforms for sharing your story (with your permission) through our website, social media, and events.
- Participate in Events and Workshops: We host regular events, workshops, and support group meetings to provide information, connect the community, and foster peer support. Keep an eye on our events calendar to see upcoming opportunities to get involved.
- Support Our Fundraising Efforts: Your generous donations enable us to continue our vital work in raising awareness, providing support, and advocating for the needs of the rare disease community in Northern Ireland. Every contribution, no matter the size, makes a difference.
- Become an Advocate: Help us raise awareness among policymakers and the wider public about the challenges faced by the rare disease community. Your voice can help shape policies and improve access to care and support.
- Receive Our Newsletter: Stay up-to-date with the latest news, events, research updates, and stories from the Northern Ireland rare disease community by subscribing to our newsletter. It’s a simple way to stay informed and connected.
- Start a Support Group in Your Area: Connecting with others who share similar experiences can be incredibly valuable. If there isn’t a support group in your local area for your specific rare condition or a broader rare disease group, we can provide guidance and resources to help you start one. Reach out to us to explore this possibility.
Ready to get involved?
- Contact Us to be involved at info@nirdp.org.uk
- Donate: https://www.justgiving.com/nirdp
Together, we can create a stronger, more informed, and more supportive Northern Ireland for everyone affected by rare diseases. We look forward to welcoming you to our community!
