Welcome to the Family!
NOAH understands that being told your child has albinism can be shocking and can leave you full of questions and concerns. Adapting as a family to albinism is a process and, at times, can seem isolating and uncertain. NOAH has a team of parents, professionals and adults with albinism who would like to assure you that you are not alone; and that there are plenty of resources available to your family.
To begin with, NOAH’s New Parent Program offers a trained parent liaison volunteer to each newly diagnosed family. The parent liaison will guide you through the many resources NOAH has to offer, and also provide you the opportunity to speak directly to a parent of a child with albinism who truly understands. To connect with a parent liaison, please complete this online request form.
Once we have your information, a parent liaison will email you with further resources and information. In addition, NOAH sends a special gift* for parents of newly diagnosed children which includes useful items for your child and the family, as well as the New Parent Book, Raising A Child with Albinism: A Guide to the Early Years. NOAH also offers additional programming and events, including teleconference calls for parents which include calls specific to a new diagnosis.
NOAH also encourages you to screen for a rare type of albinism called Hermansky-Pudlak Syndrome (HPS). For information regarding HPS or Chediak Higashi, contact the HPS Network at firstname.lastname@example.org or visit their website at www.hpsnetwork.org.
*Note: The toolkit, when available, is offered as an independent gift to families with a recent diagnosis, and is not a membership benefit.
Want to support the new parent program?
Donate to our AmazonSmile Wish List!
**To donate to our wish list, you must make NOAH your designated charity first! Once signed into your amazon.com account, search “NOAH” and then select “National Organization for Albinism and Hypopigmentation” as your designated charity of choice. When you shop for NOAH, AmazonSmile donates 0.5% of your purchases to our organization!