Anyone with Aspirin-Like Defect platelet disorder?

Hello,
I'm a 39 yr old woman who was recently diagnosed with the platelet disorder Aspirin-like Defect. 2 weeks ago my 5 year old daughter received the same diagnosis. We have been told this condition is quite rare, and I'd love to connect with others who have this, or whose children have it... provided there are any others out there? Somewhere? Or anyone who has a similar platelet disorder? Or is there another forum that exists somewhere for people with bleeding/platelet issues other than ITP or hemophilia? (Among many other things) I feel frustrated by the fact that there is no cure for this, and or even a real treatment. We are given Stimate, which may or may not be effective. Also, my daughter has anaphylactic food allergies, and I wondered if these conditions could be somehow related?
Thanks for reading, and thanks in advance if anyone is so inclined to write.
Cheers!

[Aspirin-like defect - a hereditary thrombocytopathy due to impaired release of platelet adenosine diphosphate].
www.ncbi.nlm.nih.gov/pubmed/263623

Since I had nevre heard of Aspirin-like Defect I had to look it up - there are several papers at the above site so just put in one. Probably others have not heard of this either.

Sorry I can't answer any of your questions - but I want to say I hope all goes well for both your daughter and you!