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doodles

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1 reviews

Review for VHL ALLIANCE, Boston, MA, USA

Rating: 5 stars  

This organization has helped me and my husband more than words can say. With VHL being such a rare disease even his doctors sometimes aren't sure how to treat certain problems that pop up along our journey to manage his health. This website has provided key information that has improved his quality of life and given us tools to help his doctors continue to check and prevent future health problems-we printed out the VHL handbook and gave it to the team of doctors that handles his care locally and they learned from it as well. The lectures on the website from a neurosurgeon at MD Anderson gave us key infomation we had been wanting concerning tumors on his spine. We from there went to see this doctor and our minds were put at ease and we learned even more about this VHL disease. The website is also so important to help us know there are others like us out there and it reassures us that we're not walking this road alone, others with VHL are contributing alongside us with contributions for research that hopefully will mean a cure for this one day.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  General Member of the Public & Got advice from their website.