GreatNonprofits: Find non-profits and charities to review, donate, or volunteer.

Oops! You must enter a search term greater than 3 characters.

Barb A H.

Barb A H. - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits
35 Profile Views
2 Reviews

Login to send private message
Click here to get your favorites badge.
Global Genes™
September 20, 2013

I have participated with Global Genes in Washington DC for Rare Disease Day twice. They are a wealth of knowledge about Rare Diseases and policy. They share their knowledge with everyone. They are one of the leaders in the Rare Disease community.

More feedback

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2013

MY ROLE:
Volunteer

CADASIL Association
September 17, 2013

CADASIL Association is a newly formed 501(c)(3) dedicated to bringing awareness about CADASIL to the public and medical community. CADASIL Association is staffed solely by volunteers. CADASIL Association aims to unite patients, families, the medical community and all others touched by this rare genetic disease, to help create feelings of companionship and unity while forming a strong coalition as we “envision the cure and embrace the challenge”. Since its inception less than one year ago, the CADASIL Association has hosted a family Conference in Boston, MA. The Scientific Director of the Conference was Dr. Joseph Arboleda-Velasquez MD., PHD., an NIH funded investigator working at Schepens Eye Research Institute/Harvard Medical School. He brought together a distinguished panel that included Dr. Anand Viswanathan (Neurologist, Massachusetts General Hospital), Dr. Stephen Salloway (Neurologist, Brown Medical School and Butler Hospital), Dr. Dev Batish (Chief Director, Genetics, Athena Diagnostics), Dr. Adrian Ivinson, (Director, Harvard NeuroDiscovery Center), Peter S. Saltonstall (President and CEO of NORD), Dr. Rosa Davidsdottir, (Neuropsychologist, Mass General Hospital), Dr. Marcie Glicksman (Co-Director Lab for Drug Discovery, Harvard NeuroDiscovery Center), and Diane Lucente, M.S. (Genetics Counselor, Mass General Hospital). The speakers gave informative presentations and the panelists answered all question asked by the audiencce. CADASIL Association will continue to spread awareness through www.cadasilassociation.org

Ways to make it better...

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

Build a larger, stronger volunteer base of patients, the medical community and others touched by CADASIL.

More feedback

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

A lot

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Board Member