You may not know anyone else with a growth-related disorder, but you’re not alone. There are other families going through the same thing. Patient advocacy groups help to create community, provide resources and education, and help raise awareness of disorders.
Check out these growth-related patient groups.
Human Growth Foundation
Five families of children with growth disorders founded the Human Growth Foundation in 1965; it now provides education, outreach, and support to families, medical professionals, and the public.
The MAGIC Foundation
Major Aspects of Growth in Children, or MAGIC, is a support organization founded by parents for parents. The organization provides support, education, and ongoing communication to parents and affected adults. Their motto: “Children have a short time to grow and a lifetime to live with the results.”
Noonan Syndrome Foundation
The mission of the Noonan Syndrome Foundation is to find lifesaving and effective medical treatments for people with Noonan syndrome; to raise awareness; and to build community through social media and an online support group.
Pituitary Network Association
Originally a patient communication and support network, the Pituitary Network Association is the world’s largest patient advocacy group devoted to the treatment and care of pituitary disorders. It promotes awareness and works with the medical community to develop uniform standards.
Prader-Willi Syndrome Association
Prader-Willi Syndrome Association (USA) was founded in 1975 to provide support to individuals and families, and resources for those seeking information about PWS. The organization strives to raise awareness, nurture a sense of hope and connection, advocate for research, and enhance the quality of life of those affected by Prader-Willi syndrome.
Turner Syndrome Foundation
The Turner Syndrome Foundation was created in 1987 by a group of women in Chicago for the purpose of networking and support. It creates awareness, promotes research, and provides support for all persons touched by Turner syndrome.
Turner Syndrome Society
The Turner Syndrome Society of the United States provides resources to patients, families, and health care providers regarding Turner syndrome. It has chapters across the country and hosts an annual meeting.