Any readers with the SDHB mutated gene? Or also known as SDHB genetic variant identified as (c.490C>T). Seeking others with the SDHB+.

I have this gene. My daughter, niece and brother all have the gene. I am the only one with the disease.

hello PeMa and wendie! are you still a part of this chat? i am newly diagnosed with SDHB . looking for others, being treated at NIH now after a radical nephrectomy about 8 mos ago. would love to talk to anyone else with this rare genetic thing!

Hi sarahp, I have the gene and have had the disease too, and two of my kids have the gene. You are in good hands at the NIH with Dr Pacak's team.