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Rare Diseases

All Health A-Z Results: 1-7 of 7 Web Pages

Family Connection: Cystinosis Research Foundation  External Link

This site is designed as a place to share stories about the children and young adults with Cystinosis. ... Details >

Cystinosis Research Foundation  External Link

Freeman-Sheldon Syndrome  External Link

This online brochure provides basic information for consumers about this rare genetic condition which characteristically includes a small "whistling" mouth, a flat mask-like face, club feet, joint con... Details >

Freeman-Sheldon Parent Support Group  External Link

Joubert Syndrome Information Center  External Link

Online information center provides resources, articles and reports related to joubert syndrome. Feeding & oral motor, hearing, legal help, medical journal articles and therapy are addressed.... Details >

Joubert Syndrome Foundation & Related Cerebellar Disorders  External Link

Joubert Syndrome Resources  External Link

Links to federal agencies, support groups and other nonprofit websites that provide information and resources for joubert syndrome.... Details >

Joubert Syndrome Foundation & Related Cerebellar Disorders  External Link

Laurence Moon Syndrome  External Link

Basic consumer information about Laurence Moon Syndrome including a list of synonyms and resources where you can get additional information.... Details >

National Organization for Rare Disorders, Inc.  External Link

Lowe Syndrome  External Link

Basic consumer information about Lowe's Syndrome. This page also contains a list of synonyms and resources where users can get additional information.... Details >

National Organization for Rare Disorders, Inc.  External Link

Planning for Post Operative Care for children with Osteogenesis Imperfecta (OI)  External Link

This is a fact sheet designed to offer suggestions to help parents prepare for planned or emergency operations for children with osteogenesis imperfecta. ... Details >

Osteogenesis Imperfecta Foundation, Inc.  External Link

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