The mission of the 4p- Support Group is to improve access to 4p- information to parents, family members and care providers of individuals who have 4p- (Wolf-Hirschhorn Syndrome is the main syndrome).

An online support group to help others with abetalipoproteinemia

The Acid Maltase Deficiency Association, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe Disease.

The mission if ADERC is to ﾓcompile, archive, and disseminate information concerning Alzheimerﾒs diseaseﾔ for health professionals, individuals with AD, their families and the public.

Our mission is to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional and social impact of kidney disease.

The ACMG provides education, resources and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic disease. To fulfill its mission, the ACMG strives to: ﾰ Advance the art and science of medical genetics by maintaining high standards in education, practice and research. ﾰ Increase access to medical genetic services and improve public health. ﾰ Advocate for and represent geneticists and providers of clinical genetic services. ﾰ Develop clinical practice guidelines. ﾰ Develop laboratory services directories, databases, population screening guidelines and position papers. ﾰ Establish uniform laboratory standards, quality assurance and proficiency testing. ﾰ Promote effective and fair health policies and provide technical assistance to government agencies, professional organizations and other medical specialties. ﾰ Sponsor educational programs for geneticists, other health care providers and the public, including the Annual Clinical Genetics Meeting.

The mission of AmeriFace is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education on behalf of those we serve.

It is our mission to inform, support, and empower individuals affected by cavernous angioma and drive research for a cure.

Ara Parseghian Medical Research Foundation, a volunteer, nonprofit corporation funds research projects searching for a treatment and cure for Niemann-Pick Type C disease.

ACDS is dedicated to providing lifetime resources of exceptional quality, innovation and inclusion for individuals with Down syndrome and other developmental disabilities and their families.

The Association for Molecular Pathology (AMP) is a professional association founded in 1995 to provide structure and leadership to the then-emerging field of molecular diagnostics. Through its Council and Committees, AMP pursues topics of importance to those at the forefront of this growing discipline.

Our mission is to promote the exchange of information about Gaucher's disease in Brazil; encourage cooperation among carriers to build local chapters; and make treatment available for patients.

The Beckwith-Wiedemann Children's Foundation is a non-profit organization dedicated to increasing the quality of life for those affected by this rare, 1:14,000 birth disorder.

Our mission is to provide parent-to-parent support for all of us who have experienced the death of one or more of our twins or higher multiple birth children at any time from conception through birth, infancy and early childhood, as well as to assist extended families, caregivers, twins and multiples organizations and others who are seeking to understand and support the needs of parents with a multiple birth loss.

Citizens United for Research in Epilepsy (CURE) is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.

The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease.

The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.

Cure CMD's mission is to bring research, treatments and in the future, a cure for Congenital Muscular Dystrophies. Cure CMD will do this by bringing together dedicated parent, government and research advocates throughout the world working on this common purpose. By focusing on this purpose, Cure CMD will find and fund high potential research and clinical trials. Success will be determined by clinical applications that improve the lives of those afflicted with CMD's .

The mission of the Dolan DNA Learning Center is to prepare students and families to thrive in the gene age.

The mission of EDS Today is to provide information and support to people living with EDS, their families, and the medical community.

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. EURORDISﾒ mission is: - To build a strong pan-European community of patient organisations and people living with rare diseases; - To be their voice at the European level; and ﾖ directly or indirectly ﾖ to fight against the impact of rare diseases on their lives.

The Family Empowerment Network is a resource, referral, support, and research program serving families affected by Fetal Alcohol Spectrum Disorders and the providers who serve them.