NOAH understands that being told your grandchild 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, grandparents, 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. NOAH offers programs and services geared specifically toward grandparents of children with albinism. Here you will find a variety of ways to connect with the albinism community.
A grandparent may not have access to all the information that parents have, so we compiled a list of suggestions from other grandparents that have grandchildren with albinism. This list is a beginning and is only meant as a guide to consider while finding your own way of dealing with albinism within your family.
The journey of grandparents of children with albinism is unique, and meeting others who are on the same journey can be very difficult. These teleconferences provide grandparents of children with albinism a place to connect and share their experiences with one another. Grandparents have the opportunity to connect with other grandparents, as well as specialists in the field of albinism from the comfort of home. The teleconferences are facilitated by a licensed professional and consist of a small group of grandparents. This provides a safe and comfortable environment for you to voice concerns, ask questions, share your experiences, and hear from professional guest speakers.
NOAH is always looking for volunteers and fundraisers. Please review the many opportunities or reach out to us with your own ideas!
NOAH has many local and regional events where you can meet new friends in the albinism community.
Learn more about albinism and the services available from NOAH.
Hermansky-Pudlak Syndrome (HPS) & Chediak Higashi Syndrome (CHS)