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Other sources of info on VHL..
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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:
rarediseases.info.nih.gov/GARD/EmailForm.aspxInformation in Spanish and English. You don’t have to be living in the US to ask a question.
Rob
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joyceg98 14 days ago | Originally written in EnglishThe best initial source of information on VHL is vhl.org where you will find the Handbook (vhl.org/handbook). There is also a list of country contacts both in this Forum and at vhl.org/support
Best wishes,
Joyce -
robpleticha 9 days ago | Originally written in EnglishHi Joyce,
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:
rarediseases.info.nih.gov/GARD/Disease.asp...Rob
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