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1 reviews

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

there is an incredibly overwhelming feeling when your child is diagnosed with a rare disease. You are looking for answers and lived experiences, but typing the words into a search engine can generate an overwhelming amount of information without context. I am so lucky to have learned about the Autoinflammatory Alliance early in our search for a diagnosis. They have provided us with so much information rooted in facts not fear. They have created a community where parents and patients can exchange information and learn from each other. They recommend doctors who are well versed in these conditions, and recognizing that not all doctors are fluent in all rare diseases they provided us with cards to hand out in case we needed to seek medical care from those not familiar with her diagnosis. Most of all they empowered me to be an advocate for my daughter. They continue to play a leading role in educating both providers and patients and families and give of themselves constantly to our community. I really could not do this journey without them.

Role:  Donor