United Network for Organ Sharing (UNOS)
UNOS is a private, nonprofit organization managing the nation's organ transplant system under contract with the federal government.
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Birthmarks.com
Information, recommendations, active interchange, and lots of resources about port wine stains and hemangiomas. Provides a free private newsgroup or subscription to an online newsletter.
CarePages
A free service that allows families to easily create web pages during a health challenge to keep friends and family informed.
Global Genes
Global Genes is committed to providing information, resources and connections to all communities affected by rare disease.
Operation Respect
Includes information on the anti-bullying initiative, “Don’t Laugh at Me,” as well as professional development workshops and school assembly programs.
PHACE Syndrome Community
Support research and advocacy, networking among families, provide factual information and resources.
Lipedema Foundation
Lipedema Foundation focuses on research for cause & effective treatment of lipedema.
Proteus Syndrome Foundation
A 501c3 not-for-profit organization dedicated to improving the lives of Proteus patients by funding AKT1 research. We focus on providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals.
PTEN Hamartoma Tumor Syndrome Foundation
Education, financial assistance, research and awareness.
Section 504
Section 504 of the Rehabilitation Act of 1973 ensures that individuals with disabilities are given protection from discrimination. Often at school, this means that a child is allowed reasonable accommodations as determined by a 504 Committee.