• Alagille Syndrome Alliance Worldwide support network for people who care about people with alagille syndrome.

• Canadian Association of Genetic Counsellors works to establish minimum standards of practice, to encourage professional growth, and to increase recognition of the genetic counselling profession in Canada.

• Chromosome 9P- Network international not-for-profit organization dedicated to educating and bringing together families with children who have Alfi's syndrome.

• Costello Kids Official site of the International Costello Syndrome Support Group. Includes medical information, photographs and videos, therapy ideas, news, and links.

• Fatty Oxidation Disorders Informational site provides details on newborn screening, on numerous diseases, medical information and support resources such as a newsletter and email List.

• Gene Clinics Medical genetics knowledge base. NIH funded, expert-authored descriptions of inherited disorders. Covers genetic testing in diagnosis and management and genetic counseling of patients.

• Genetic Alliance provides a global resource for genetics information including a directory of condition-specific lay advocacy member groups.

• Genetic Health offers general information on conditions, DNA mutations, genetic testing, and research participation.

• Genetic Interest Group national U.K. alliance of organizations which support children, families, and individuals affected by genetic disorders and genetic diseases.

• Hereditary Angioedema Support Group A non profit Organization dedicated to those families that are touched by a rare blood disease known as Hereditary Angioedema

• Hereditary Disease Foundation nonprofit, basic science organization dedicated to the cure of genetic disease.

• IMMD Institute of Medical Molecular Diagnostics Ltd. The IMMD is a genetic testing laboratory located in Germany. Provides genetic tests for hereditary breast cancer, various cardiovascular diseases or diseases with onset in childhood.

• International Joseph Disease Foundation Offers education, medical referrals, up-dates, and support to all individuals interested in Machado-Joseph Disease.

• Joubert Syndrome Foundation Organization, conferences and contact details. FAQs about the disease, information center and resources.

• Laurence Moon Bardet Biedl Society Fully accessible site for people with LMBB, their families, friends, carers and interested professionals. Opinions, news, views, research, updates, and contact details.

• Mucolipidosis IV Foundation information forum on ML$, a rare genetic disease.

• Nail Patella Syndrome Worldwide The home page of Nail-Patella Syndrome Worldwide, the only non-profit serving the needs of people with Nail-Patella Syndrome. Includes information on the syndrome and the work of the organization.

• Pallister-Hall Syndrome: A Layman's Guide For PHS patients, their care givers, and medical practitioners.

• Pallister-Killian Syndrome information and support for this rare chromosomal disorder.

• Proteus Syndrome Foundation Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters.