Members had the opportunity to discuss future engagement activities to raise awareness of rare conditions and to share their thoughts on how they would like to collaboratively celebrate Rare Disease Day (28th February 2025.)
Members agreed to write a tweet that could be shared on social media that outlines:
- What it is like to live with a rare condition
- Their hopes for the future in the world of rare condition
- Their experiences of being part of We R Rare
At the end of the meeting, members shared that they felt listened to, were able to contribute to discussions and felt that the session was run well.
Check out our twitter page to read what they shared on the day.
The next meeting will be in March 2025.