My Nonprofit Reviews

Molly K.1 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Molly K.1

51 profile views
1 reviews

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

The Autoinflammatory Alliance was integral in helping us get a diagnosis and treatment for our son well ahead of the average for these types of diseases. At a dead end with the limited doctors in our city, members of the Alliance and the community they have built provided us with resources, multiple doctor recommendations, and incredibly helpful advice based on their own experiences.

We are lucky enough to live near several other families who have ties with the alliance, and through a sponsored picnic, we were able to meet them face-to-face. I can’t do justice to how valuable those connections are to us in this short review, but there is an element to chronic illness that can be so isolating - having real-time conversations about our “normal” have helped me lift myself up many times, over a year after the event. Plus, we were able to pick up some of the education materials the Autoinflammatory Alliance provides. The business card-sized disease info handouts have been great. I can now provide those who work with my child, or simply want to know more, a quick “official” summary, complete with a link to the Alliance’s website - it takes the pressure off me to have to explain everything in depth any time I’m questioned about it.

Finally, I so appreciate their research-based approach. Research is power. I was not able to attend the symposium this year, but I hope to go in the future! As our diagnosis remains “unspecified,” getting the leading doctors and researchers together will only help us and the others like us. Thank you, Autoinflammatory Alliance, for all you do - for patients, for families, for education, for doctors - you are making a big difference in many lives!

Role:  Client Served