Learning about genetics may not be easy, but it is important to your family. This guide should help answer some…
Resource Categories: Genetics
Aaron’s Tracheostomy Page
Aaron’s Tracheostomy Page is written by a parent, Cynthia Bissell, RN, to help assure the highest quality home care for…
Angelman Syndrome Foundation, Inc
The Angelman Syndrome Foundation’s mission is to advance the awareness and treatment of Angelman syndrome through education and information, research,…
Autoinflammatory Alliance
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved…
CLOVES Syndrome Community
CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome. The CLOVES Syndrome Community…
Cornelia de Lange Syndrome (CdLS) Foundation
The CdLS Foundation provides a host of services that educate and unite families touched by this little-known genetic syndrome.
FSHD Society
Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. Typically beginning in…
Genes in Life
Genes in Life is a place to learn about all the ways genetics is a part of your life. On…
Genetic Alliance
This network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and…
Genetic Tests for Health Purposes
The Council of Europe has developed the ‘Leaflet on Genetic Tests for Health Purposes,’ which aims to provide general objective…
Genetics 101
This introductory video on genetics is brought to you by PATH Parent-to-Parent Family Voices of Connecticut. It is the first…
Little People of America
Little People of America, Inc., is a national non-profit organization that provides support and information to people of short stature…
Little People of America – New England Region
New England District 1 covers the local LPA chapters in the Northeast part of the U.S. which includes Maine, New Hampshire,…
Moebius Syndrome Foundation
The Moebius Syndrome Foundation’s mission is to provide information and support to individuals with Moebius syndrome and their families, promote…
National Organization for Albinism and Hypopigmentation (NOAH)
NOAH is a U.S. based nonprofit, tax-exempt organization that offers information and support to people with albinism, their families and…
National Organization for Rare Disorders (NORD)
NORD has a dedicated staff of information specialists to answer your questions about patient resources, clinical trials and more. NORD’s…
Neurofibromatosis (NF) The Littlest Tumor Foundation
This genetic disorder has three forms: NF1, NF2, and Schwannomatosis. NF1 affects 1 in 3,000 births and causes tumors to…
New England Hemophilia Association
The New England Hemophilia Association offers educational materials, financial programs, and activities for all ages throughout the year. Family Camp:…
Parent Project Muscular Dystrophy
A nonprofit organization focusing on Duchenne muscular dystrophy. PPMD funds research, raises awareness, promotes advocacy, connects the community, and broadens…
PIC Family Voices Episode Four: Health Care Transition – The Youth Perspective
In this episode, Ainsley Peacock speaks to YEAH Council Members CJ and Abby about their experiences in transitioning their healthcare…
RARE New England
The mission of RARE New England is to bring together New England patients, families and providers touched by rare and…
Swim Angelfish – Adaptive Swim Program
Angelfish Therapy provides aquatic therapy with licensed Physical and Occupational Therapists. They are specially trained on working in the water…
The 22q and You Center
The 22q and You Center at Children’s Hospital of Philadelphia is an internationally recognized leader in the diagnosis and treatment…
The International 22q11.2 Foundation
The International 22q11.2 Foundation is a nonprofit organization dedicated to supporting the needs of families and individuals affected by chromosome…