Hermansky-Pudlak Syndrome Network, Inc.

General Organizational Information
Organization Name: 
Hermansky-Pudlak Syndrome Network, Inc.
Organization Acronym: 
HPS Network
Year Established: 
1992
Brochure thumbnail: 
Brochure: 
application/pdf icon
hermansky_pudlak.pdf
Mission Statement: 
Our mission is to gather and provide information, to promote awareness and research and to offer support to our members.
Status of organization: 
Incorporated non-profit
Professional/Medical Board?: 
Yes
501(c)3 Status?: 
No
Paid staff?: 
Yes
Board of Directors?: 
No
Serves the following conditions
Organizational Contact Information
Title: 
President & Founder
First Name: 
Donna
Last Name: 
Appell
Address: 
One South Road
Oyster Bay, NY, 11771-1905
Phone: 
+1 516 922 4022
Fax: 
+1 516 624 0640
Toll Free Number: 
+1 800 789 9477
Email: 
dappell@hpsnetwork.org
Website Address: 
http://www.hermansky-pudlak.org
Resources and Services Provided
Languages spoken: 
English
Printed materials available in: 
English
French
Spanish
Information provided for: 
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Teachers
Legislators
Media
Students
Researchers
Range of services include: 
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Medical referrals
Peer support
E-mail list
Telephone helpline
Genetic information
Clinical or treatment centers
Speakers
Services for the visually impaired
Advocacy
Educational materials include: 
Fact sheet(s)
Journal articles on condition
Pamphlet(s)
Booklet(s)
Research updates
Newsletter
Bibliography
Website
Student materials
Conferences/workshops for: 
Affected individuals and/or families
Researchers
Professionals
Financial assistance for: 
Transportation
Scholarships
Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org