My Nonprofit Reviews
Review for Vhl Alliance, Boston, MA, USA
The VHL Family Alliance as well as supporting people with VHL has reached out to others with rarer genetic conditions such as "Hereditary Leiomyomatosis and Renal Cell Cancer(HLRCC)" and "Birt-Hogg-Dubé Syndrome(BHD)". I have HLRCC and found that the organization called the HLRCC Family Alliance was being actively nurtured from an embryonic state by the VHLFA. The full resources of the VHLFA have been available to the HLRCCFA to get then into an up and running state, without which it would have faltered miserably, The VHLFA expertise and knowledge has been shared so that we all feel part of the bigger community. Help was given in the writing of a HLRCCFA Handbook and setting up of our own web site. Without doubt in my mind the VHL Family Alliance can be proud of its contribution to patient advocacy and is second to none.
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