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Other sources of info on VHL..View: Translations (EN) Original language
The National Institutes of Health have Genetic and Rare Disease (GARD) Information specialists that may be able to help you find information.
The GARD Information Center does not provide genetic counseling and does not offer diagnostic testing, referrals, medical treatment or advice.
There is a phone number and online form found here:
Information in Spanish and English. You don’t have to be living in the US to ask a question.
I made this post across all of our Communities after receiving feedback that this resource has been extremely helpful to patients. However, in the case of VHL....I should have approached this differently. Of course, the VHL Handbook is THE source of information. Also, people with VHL have many great patient groups that should be the first stop when looking for answers.
I wanted to identify another resource for rare disease patients, as for diseases other than VHL, information can be much harder to come by.
Here is the GARD page on VHL which also lists the VHL Handbook: