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Hermansky Pudlak Syndrome Network

Rating: 5 stars   1 review 391


1 South Rd Oyster Bay Cove NY 11771 USA




• National Institutes of Health Protocols (Drug Trials and Natural History Study) • Gained interest and support from media outlets around the country. • Gained interest from several medical schools around the country.


Compiles patient data to assist in research, runs conferences to collect & provide disease information and provides info and support to affected families

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Reviews for Hermansky Pudlak Syndrome Network

Rating: 5 stars  

5 people found this review helpful

As a volunteer, concerned citizen, but most importantly a proud member, I am very enthusiastic and passionate of the needed work the HPS Network is doing. Finding dedicated researchers and advocates for a rare genetic disorder affecting thousands of albinos around the world. Gathering and educating anyone willing to learn and spread the word, our mission is to find a cure!

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

the people served, resources published, number of interested professionals, and also personal experience.

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

likely not have as much enthusiasm and energy as our wonderful executive director Donna does. But I wouldn't change the organization's lofty goals.

What I've enjoyed the most about my experience with this nonprofit is...

the environment that all the members are surrounded by (affection and support) as well as the education provided to us about the medical conditions we share.

The kinds of staff and volunteers that I met were...

warmhearted, helpful, willing to teach, and visibly engaged and dedicated to our cause.

If this organization had 10 million bucks, it could...

gather more members, tell all the medical schools in the country about our condition, and help fund research to find us a cure!

Ways to make it better...

my vision was better.

In my opinion, the biggest challenges facing this organization are...

seeking out the lost and helpless albinos wondering why they can't stop bleeding...and other such cases.

One thing I'd also say is that...

I am very attached to this cause, and I am certainly committed to this organization for life.

When was your last experience with this nonprofit?


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