Information for Parents, Grandparents and Caregivers
Hi Mom and Dad, Grandparents and Caregivers!
Welcome! Just like your child, this section will be growing and changing so come back often! We will try to provide topics relevant to many different age groups to help you regardless of your child’s age. We hope you find helpful information as well as the support you need for your journey!
If you have recently learned that your child has albinism, we invite you to also visit our New Parent Program section.
If you have recently adopted a child with albinism, we invite you to also visit our new parent program section.
The visual impairment associated with albinism can keep an infant or toddler from progressing as quickly as their peers. Early Intervention Services can help your child stay on level with other children of the same age group.
Take a look at other programs and services NOAH offers for parents and caregivers of children with albinism. Check out the CARE Project as a resource for IEPs, learn about Parent Connection Teleconferences and so much more!
Grandparents – Check out the specialized programs and services that NOAH offers for grandparents! On the Grandparents’ page, you will find Helpful Tips, information on Grandparent Connections and ways to connect via Volunteering and Local Events.
We have published two books to help you to be an informed parent, caregiver and grandparent, and how to advocate for your child / grandchild. 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.
Driving may be one of the scariest topics for parents and caregivers. How will I conquer my fears of low vision driving if my child can drive? Here you will find articles on a variety of subjects related to albinism and driving. Come back often to read the latest articles.
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.
Hermansky-Pudlak Syndrome (HPS) & Chediak Higashi Syndrome (CHS)
More information regarding the symptoms and treatments for these rare types of albinism can be found at www.hpsnetwork.org.
Would you like to know more about the social aspects of albinism, sun protection or low vision aids? Visit the Information Bulletin page to learn about these topics and more!
Read the full manuscript of ‘Sharing Thoughts About Money’ by Dr. Anne Corn, recently featured in Albinism InSight.