Programs & Services for Parents and Caregivers of Children with Albinism
New Parent Program
If you have recently learned that your child has albinism, we invite you to visit our New Parent Program – Newly Diagnosed Children page. If you have recently adopted a child with albinism, we invite you to visit our New Parent Program – Newly Adopted Children page.
NOAH, in partnership with Lighthouse Guild, has developed a free parent support teleconference program as another way to bring the albinism community together. Parent Connections is an opportunity to talk with others who understand what you are going through as a parent of a child with albinism. The teleconferences are facilitated by a licensed professional and consist of a limited number of parents. This provides a safe and comfortable environment for you to voice concerns, ask questions, share your experiences, and hear from professional guest speakers.
The NOAH SchoolKit provides information and resources to guide parents and caregivers in supporting general education teachers when a student with albinism will be in their classroom. The kit is divided into five sections with instructions and suggestions on how to use the information within it. Sections include informational sheets for teachers, documents to help guide conversations between parents / caregivers and educators and templates for student involvement in conversations and advocacy.
Children with albinism have different visual acuities, functional vision levels and personal developmental needs. The NOAH CARE Project (Create Albinism Resource for Education) provides resource information to aid in formulating your child’s education documents (IFSP, IEP or 504 Plan). At the CARE Project website, you can find information on grade level goals, assistive technology recommendations, Orientation & Mobility objectives and social development objectives.
We have published two books to help you to be an informed parent / caregiver and advocate for your child. Visit the NOAH store to learn about Raising A Child with Albinism: A Guide to the Early Years and Raising a Child with Albinism: A Guide to the School Years.
Since albinism is so rare in the United States and Canada, many doctors have never run across the condition. That’s why we have asked our members to contribute to a listing of doctors they have used. Please keep in mind that doctors may have moved or may no longer be in practice. If you run into that situation, please contact NOAH so that we can update our list.
NOAH Family Camp
While designed for families to enjoy camp activities with one another, camps will also have a bit of albinism-related programming. Grouped by age, campers attend one informational session or discussion group each full day of camp. Parents and caregivers also have group discussion options plus plenty of time for networking and informal conversation to share information and support. Camps are held in years when there is not a national conference.
Hermansky-Pudlak Syndrome (HPS) & Chediak Higashi Syndrome (CHS)
Take a look at other information geared toward parents and caregivers of children with albinism.