I AM BEYOND EXCITED!!!!!!
I have emailed NORD, ORD, GARD, and ORPHA regarding the syndrome ROHHAD. As none of these had a listing for ROHHAD and all of these are organizations for rare diseases. I would like to share an exciting email I received back from GARD today!
Summarized version of the French study on ROHHAD vs. ROHHADNET
Dear Ms. Fowler,
You recently submitted an online e-mail to the Genetic and Rare Diseases (GARD) Information Center about ROHHAD (rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation). You mentioned that your 4-year-old daughter has been diagnosed with ganglioneuroblastoma cancer and ROHHAD. After conducting research on your own and consulting with your daughter's physicians, you have come to find that there is very limited information available about this diagnosis. You wrote to us to request that we add ROHHAD to the ORD list of rare diseases.
We wish to thank you for bringing this condition to our attention and in response to your email, we have created an online question and answer page on this topic. If you'd like to view this information, we invite you to visit the links listed below.
Visit the link to view a Q&A about ROHHAD. CLICK HERE!!!
Visit the following link to view resources related to this condition. CLICK HERE!!!
THANK YOU FOR LISTENING!!!!
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Mist; you AWSOME I am so proud of you and the things you are doing for Havey the Miracle Child as I refer to her. I think it would be fantastic if something could be found to fight this and make Havey better; she is an adorable child and very special.
ReplyDeletelove both of you very much;
Candy and G-Grandma B.
Haven!!!!
ReplyDeleteThank you SO MUCH for the beautiful Christmas card! I heard you had a GREAT Christimas and I am so glad to hear that, you deserve it! Take care and MANY HUGS!!!
-Aleah