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National Organization for Albinism and Hypopigmentation - AFB Directory Profile

NOAH logo

General Information

National Organization for Albinism and Hypopigmentation
PO BOX 959
East Hampstead, NH 03826-0959
(603) 887-2310 (Local)
(603) 887-2310 (Fax)
(800) 473-2310 (Toll-Free)
info@albinism.org
http://www.albinism.org

Brief Description

NOAH is a U.S.-based nonprofit, tax-exempt organization that offers information and support to people with albinism, their families and the professionals who work with them. NOAH is operated by its members on a volunteer basis and is funded primarily by dues and contributions of its members. NOAH has also received grants from foundations and organizations for specific projects.

NOAH's objectives are:

  • Provides information and support regarding albinism and related conditions.
  • Promotes public and professional education about these conditions
  • Encourages research and funding that will lead to improved diagnosis and management of albinism.
  • Provides networking for those with special interests related to albinism such as minority groups and Hermansky-Pudlak Syndrome.


Hours of operation: 24-hour voice mail.
Staff description: Operated primarily by members on a volunteer basis.
Geographic area served: Primarily United States, but no restrictions.
Publications: Informational bulletins, quarterly magazine, and educational video.

Staff

Michael McGowan, Executive Director, mmcgowan@albinism.org
NOAH Administrative Services, General Contact, (603) 887-2310, info@albinism.org

Services Offered

Services for Adults

  • Braille/Electronic/Audio/Large Print Production
    • Informational bulletins and quarterly magazines.
  • Counseling
    • Offers self-help groups.
  • Information and Referral
    • Offers programs to enhance public awareness.

Services for Children

  • Community Outreach Programs
    • Holds a biannual family summer camp for children with albinism and their families. Holds a biannual national conference for the albinism community.
  • Information and Referral
    • NOAH provides information and support for its members by:
      • Sponsoring workshops and conferences on albinism
      • Publishing a quarterly magazine, Albinism InSight
      • Publishing information bulletins on topics specific to living with albinism
      • Providing a network of local chapters and contact people
      • Providing a web site that has information about albinism and bulletin boards where people can share experiences
      • Spreading knowledge about albinism and working to improve attitudes towards those with the condition through television appearances, newspaper articles, information packets for libraries, and outreach to professionals
      • Networking with support groups for people with albinism in other countries, and promoting development of albinism support groups throughout the world through participation in the Albinism World Alliance.
    • Summer/Day Camps and After-school Programs
      • The NOAH's Family Summer Camp is offered biannually in the summer of odd numbered years.
    • Support Groups
      • NOAH works to facilitate connections among individuals in the albinism community. Call or e-mail for more information.

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