Let’s Talk Training Tour – stopping off at a virtual location near you!

Breaking Down Barriers (BDB) is a collaborative network bringing together organisations that support people living with rare, genetic and undiagnosed conditions. Whether you are a condition-specific support group, a regional or national charity, or anRead more

What an incredible Rare Disease Day!   From powerful conversations, podcasts and presentations in Westminster to advocates, families and organisations coming together to raise awareness. Rare Disease Day is observed every year on the 28thRead more

Rare Disease Day – All About Equity Rare Disease Day falls on the last day of February each year – 28th February 2026 (or on a leap year the rarest day of the year 29thRead more

This year, the Rare Disease Day reception at Westminster welcomed the rare disease community. People with lived experience, organisations at the heart of this work and policy makers discussed everything rare, the progress made toRead more

We have joined forces with the GRACE project which stands for Genetics Research Awareness via Community Engagement. The Grace project is a team of researchers who are passionate about all things genetics related, and theirRead more