APDS Rare Disease Coalition

APDS Rare Disease Coalition is a patient organization that supports people living with Activated PI3K Delta Syndrome (APDS), a rare genetic immune disorder. It brings together patients with a confirmed APDS diagnosis, those suspected of having the condition, and their families and caregivers. The coalition works to improve early diagnosis, increase access to specialist care and treatment, and raise awareness of APDS among healthcare professionals and the public. It provides reliable educational materials, patient resources, and information on research and treatment options, while also building a supportive community through connections between families, events, and collaboration with clinicians and researchers.


Organisation website:
https://www.apdscoalition.org/