Today, on Rare Disease Day, we stand in solidarity with people across Scotland and around the world living with rare conditions—including those in our Scottish bleeding disorders community.
At Haemophilia Scotland, we work to support, connect, and empower people affected by haemophilia, von Willebrands, and other rare bleeding disorders. Whether through awareness campaigns, educational events, peer support, or advocacy, we are committed to making sure no one faces their condition alone.
This year, we continue our mission by:
- Hosting community events like our Learn & Connect series
- Raising awareness of bleeding disorders among healthcare professionals
- Advocating for better recognition of how these conditions impact women and girls
- Collaborating with health care professionals to develop/improve resources for families, schools, and workplaces
Rare diseases may be uncommon, but together our voices are strong. Join us in raising awareness today—because every person, every story, and every voice matters.
This year, the Genetic Alliance have gathered stories of those living with a rare condition and produced an “anthology of rare experiences.” Look out for Kimberley Stewart-Beasley’s poem on her experience of living with a rare bleeding disorder, dysfibrinogenemia. See more on the Genetic Alliance website