International network. 2 affiliated groups. Founded 1992. Mutual support and education for families affected by Hermansky-Pudlak Syndrome and Chediak Higashi Syndrome. Networks families together for support. Newsletter and annual conference. Supports research.
Write:
Hermansky-Pudlak Syndrome Network, c/o Donna Jean Appell
1 South Rd.
Oyster Bay, NY 11771-1905
Voice: 1-800-789-9477 (voice/fax) or 516-922-4022
Fax: 516-624-0640
Website: http://www.hpsnetwork.org
E-mail: dappell@hpsnetwork.org
Verified: 8/7/2012