Rare and BDUC working group to be formed
Written by Sam Wilson, November 10, 2023
We’re immensely proud of the fact we have members with a wide range of bleeding disorders. A key part of this is understanding their needs and challenges and representing them in ensuring they’re properly served and understood in both care services and relevant policy.
Those with extremely rare bleeding disorders or disorders without a known cause often find themselves underrepresented and underserved in treatment options and policy decisions. We recognise our responsibility to play our own role in changing this and enabling these groups to do it themselves.
To do this, we understand the need to further our knowledge and understanding at every opportunity. With this in mind, we’re launching a new Rare and BDUC (Bleeding disorder unknown cause) working group.
As well as developing our understanding, the aims of this group will be:
- Advocating the need for further research and developed treatment
- Enabling connections between people with rare bleeding disorders and relevant care givers and decision makers
- Promoting and enabling the sharing of relevant knowledge to further care and treatment options
A formal list of objectives will be published once the group has been properly formed.
We’re looking for people interested in being part of this group and driving the vital work it will do.
The conditions we will be looking at in this group include:
- Fibrinogen (Factor I) deficiency
- Prothrombin (FII) deficiency
- FV deficiency
- FVII deficiency
- FX deficiency
- FXI deficiency
- FVIII deficiency
- Platelet disorders including:
- Glanzmann’s thrombasthenia
- Bernard Soulier syndrome
- Hermansky Pudlak syndrome
- Platelet release and storage defects
- Bleeding Disorder Unknown Cause (BDUC)
If you or one of your family members have a rare bleeding disorder and you’re interested in being part of the group, please email [email protected] or [email protected] with an initial expression of interest, including a brief background on why.