APDS global patient support group launched!

I know that it can be difficult receiving a diagnosis of APDS – then finding that you don’t know anyone else with the condition. It can feel isolating and frightening for patients. After a couple of patients and families approached me directly I have decided to set up a Facebook support group.

I’d love it if you applied to join. You can find the group here.

You are not alone.

Best,

Ed Banham-Hall

One thought on “APDS global patient support group launched!”

  1. I have a question. My daughter had genetic testing done for another purpose but in getting the results, she has two very rare genetic mutations (PIK3CD and NLRP3) that explain her symptoms completely. We thought it was something else. Since she has the PIK3CD mutation, does that mean that she absolutely has APDS/PASLI? What’s the difference between APDS and PASLI? We haven’t seen a doctor yet. The genetic doctor didn’t know anything about these mutations.

    Thanks!
    Danielle

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