Power of Connection Groups

Power of Connection is a welcoming space for people living with rare, rarely diagnosed, unnamed, or undiagnosed conditions to come together and share their lived experiences.

These groups are:

• Community-led – run by people in the community who are living with rare conditions.
• Inclusive and open – not condition-specific; anyone with a rare, rarely diagnosed, unnamed, or undiagnosed condition is welcome.
• Supportive and safe – facilitated with the support of NIRDP, ensuring the right safeguarding and legislation are in place so members can feel comfortable, included, and valued.
• Dynamic and flexible – meetings are vibrant, open, and scheduled monthly (or more often if needed, depending on the group).

In each session, members openly share their struggles and experiences, creating opportunities for others to learn, connect, and feel less alone. By being part of these groups, individuals not only receive support but also contribute to building change and raising awareness within the community.

We’re excited to welcome new members to our group! If you’d like to join and stay connected with our community, please take a moment to fill out the membership form. This helps us record your interest and keep you updated on events, news, and opportunities.