Programs & Services for Parents and Caregivers of Children with Albinism

New Parent ProgramNew 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 SchoolKitNOAH SchoolKit

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.

 

IEP, IFSP, 504 planNOAH CARE Project

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.

 

Parent ConnectionsParent Connections Teleconferences

Join our Parent Connections program. The teleconferences consist of a limited number of parents to provide a safe and comfortable environment for you to voice concerns, ask questions, and share your experiences. Groups meet for one hour twice a month. They are facilitated by a licensed professional and feature presentations from professionals on raising children with albinism. This program is made possible by the generous support of the Lighthouse Guild International.

 

NOAH Books for Parents and Caregivers 

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.

 

Connect with Doctors – Find or Recommend Doctors

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.

 

Events

Meet other parents and caregivers who have walked the road you are traveling. Meet adults with albinism to gain insights into what it’s like to live with a rare genetic condition.

Hermansky-Pudlak Syndrome (HPS) & Chediak Higashi Syndrome (CHS)

Information regarding the symptoms and treatments for these rare types of albinism can be found on the HPS Network’s website (www.hpsnetwork.org) or by emailing questions to info@hpsnetwork.org.

 

Information for Parents

Take a look at other information geared toward parents and caregivers of children with albinism.