RESOURCES FOR FAMILIES AND FRIENDS
For the newly diagnosed:
Welcome to Holland, by Emily Perl Kingsley
On Radical Acceptance (& Not Fixing Your Kid) by Heather Lanier
Welcome to the Club, from A Diary of a Mom blog
It’s Not About the Exceptions: All Stories Matter, from Ellen Stumbo
For our village:
How to Help a Rare Disease Family, Graphic by Effie Parks of Once Upon a Gene podcast
9 Ways You Can Help a Special Needs Parent, by M. Lin
7 Things You Don’t Know About a Special Needs Parent, by M. Lin
Books for adults:
Raising a Rare Girl: A Memoir by Heather Lanier
This Boy We Made: A Memoir of Motherhood, Genetics and Facing the Unknown by Taylor Harris
Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau
The Reason I Jump: The Inner Voice of a 13-Year-Old Boy with Autism by Naoki Higashida
Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children by Gina Gallagher and Patricia Konjoian– A humorous, but helpful book about raising children with special needs.
Genetics for Dummies by Tara Rodden Robinson
The Out of Sync Child by Carol Kranowitz– Provides a thorough understanding of Sensory Processing Disorder (SPD).
Books for Children:
These books are not all necessarily about special needs. Some merely teach children that it is okay to be different or teach the importance of kindness.
Just Because by Rebecca Elliott
Dancing With Daddy by Anitra Rowe Schulte
Spaghetti in a Hot Dog Bun by Maria Dismondy
Tacky the Penguin by Helen Lester
Horton Hears a Who by Dr. Seuss
It’s Okay to be Different by Todd Parr
Red: A Crayon’s Story by Michael Hall
This article discusses two women who share a very rare genetic variation and the different ways in which the variation affects each of them.
“The DIY Scientist, the Olympian and the Mutated Gene” by David Epstein, ProPublica, 1/16/2016
Articles that discuss Whole Exome Sequencing:
“Fighting a One of a Kind Disease” The New Yorker, by Seth Mnookin, 7/21/2014
“What Do You Do When You Have One of the Rarest Diseases Around” by Emily Mullin
Genetic and Rare Diseases Information Center – provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases.
University of Michigan Health System – page on Genetic Syndromes, contains many useful links
National Human Genome Research Institute – Talking Glossary of Genetic Terms
Global Genes – Rare Toolkits – provides individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are being created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.
Rare Disease Day – official website for Rare Disease Day, which occurs on the last day of February each year
Clinical Trials – ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. * can search HIST1H1E on this site to find out if there are any current clinical trials.
Orphanet – portal for rare diseases and orphan drugs
The Mighty – offers inspirational stories of people and families living with rare diseases and special needs
SBSK – Created by Mr. Chris, a Special Education teacher in the United States, who creates videos of the students in his classroom to help teach the world about neurodiversity.
Make-A-Wish America – granting wishes for kids with life-threatening or life-limiting medical conditions.