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1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I am a patient with VHL who has volunteered with the VHL Family Alliance since 1994. I took the Charity to the next level by making it an official Canadian Charity with a Registration Number. The first Candian meeting was held in a back yard in BC. There was another meeting in BC and a Global meeting held in London Ontario.

I've had multiple brain, spinal and kidney operations as well as the loss of one eye and through it all I used the information and professional guidance of the Alliance to help me cope.

The volunteers and Joyce Graff herself are both caring and professional at the same time. This organization has been fortunate in having a leader with the skills and dedication of Joyce Graff.

There is noting negative to say about the Alliance. Joyce has worked very hard on making sure the structure around her is solid moving forward and I do hope the organization stays strong if the time comes when Joyce has to step back.


I've personally experienced the results of this organization in...

As a patient the information gathered by this organization has helped me obtain the information I needed to make the best decision for my healthcare at that time.

If I had to make changes to this organization, I would...

This organization has exceeded my expectations with newletters, chat groups, radio ect. I'm so proud that we've kept up with the changing times with Facebook etc. that I can't think of any improvements that would help at this time.

Role:  Volunteer & I legally registered this Charity in Canada.