I just found a like to a study done in Montreal Canada that involved 2 patients with Adrenal Insufficiency that led the doctors to discover the patients had POMC. This VERY rare genetic condition has less than 50 in the world. as far as I know my son Nathaniel is the only one in the USA and I am trying to follow any lead I can to connect with other families. I sent an email to the University of Montreal and they are unable to help me. I sent an email to a doctor in Germany and he told me that he also has 2 patients with POMC, but is unable to help me further.......I AM ALONE ON POMC ISLAND. my heart is broken and I don't know what else to do. someone reccomended that I post in groups like this in search of these familys.....I NEED contact, please share my story. Can you all help? www.facebook.com/POMCmomma
I suggest that you contact the Magic Foundation (use a search engine) as they help support rare endocrine disorders for children and they may have a network that can either help you find other children with the same or similar disorders. It is a suggestion. They also have an annual meeting where kids get together which is nice. That could be some face to face contact with others going through similar issues.
I am assuming since this is a form of AI, you could also try the CARES Foundation as well. They cover CAH - congenital adrenal hyperplasia.
I tried to look up POMC but alas, kept coming up with an organization, so it was not much help.
Due to privacy laws, I rather doubt the doctors are allowed to disclose names of patients. You would have to find a forum or board where people are posting to get in touch with others.
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