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Kathryn32

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2 reviews

Review for Hope for Hypothalamic Hamartomas, Waddell, AZ, USA

Rating: 5 stars  

This nonprofit organization was able to provide information on our son's diagnosis, with current treatments and facilities for care . There is no other site regarding this ultra rare disease. They continue to search for the latest information, push medical care and treatment forward and provide support to families.

Role:  Board Member
 

Review for Hope for Hypothalamic Hamartomas, Waddell, AZ, USA

Rating: 5 stars  

When our son was first diagnosed with HH we received the prognosis that he would be in a facility by the time he was a teenager. The neurologist did not feel there was anything that could be done. It was heartbreaking. My husband then searched the web and within 5 minutes we learned more from the Hope for HH site than we had from the doctor. We also found hope.

Role:  Volunteer