Marfan Syndrome

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Marfan Syndrome has no subcategories

    Taxonomy Code: YF-3000.4910

    An inherited condition of the connective tissues, bones, muscles, ligaments and skeletal structure whose symptoms include an irregular and unsteady gait and a tall, lean body type with long extremities including fingers and toes. There is abnormal joint flexibility, flat feet, stooped shoulders, dislocation of the optic lens, and a weakened aorta.

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    There are 5 matching records.
    Service NameDescriptionLocationProgramAgency
    DIVISION OF MEDICAL GENETICSProvides diagnosis and treatment for adults and children with inherited and sporadic genetic disorders. Special programs include: Prenatal Genetic Counseling, Lysosomal Storage Disease Program, Familial Cancer Risk Counseling, Neurofibromatosis Clinic, Huntington Disease Predictive Testing, Marfan Syndrome and Craniofacial Center.NassauDIVISION OF MEDICAL GENETICS COHEN CHILDREN'S MEDICAL CENTER NORTHWELL HEALTH
    HUMAN GROWTH FOUNDATIONDedicated to helping children and adults with disorders of growth and growth hormone through research, education, support, and advocacy.NassauHUMAN GROWTH FOUNDATIONHUMAN GROWTH FOUNDATION
    INTERNSHIPSOffers internship positions at the National Marfan Foundation that was founded in 1981 by people affected by the Marfan syndrome and their families. Its purpose is to: disseminate accurate and timely information about the condition to patients, family members and health care providers, provide support for patients and their families and support and foster research. Intern position requirements include: interest in/desire to explore health policy, social work, genetics counseling, health education or program elements of a non-profit organization, ability to organize multi-phase projects, strong oral and written communications skills, interest in interacting with healthcare professional, patients and families, computer literate with working knowledge of word processing and e-mail and an interest in using databases and the ability to work effectively with others as well as independently. Call for further information.NassauINTERNSHIPSNATIONAL MARFAN FOUNDATION
    MARFAN SYNDROMEPatients are evaluated by the Divisions of Human Genetics and Cardiology. Referrals to Orthopedic and Ophthalmologic services are coordinated by the genetic counselor, as needed. Patients are seen for medical follow-up and counseling at reqular intervals. The Clinic provides diagnosis, management coordination of medical care, genetic counseling and education.NassauMARFAN SYNDROME COHEN CHILDREN'S MEDICAL CENTER NORTHWELL HEALTH
    SUPPORT SERVICES DEPARTMENTConsists of two departments, the Information Resource Center and the National Volunteer Network. The Information Resource Center provides individualized information, counseling and support about diagnosis and management of Marfan Syndrome and related disorders to patients, family members and medical professionals. The National Volunteer Network consists of chapters, network groups and support groups. Groups provide support to members and carry out the Foundation's mission at the local level. Call for more information.NassauSUPPORT SERVICES DEPARTMENTNATIONAL MARFAN FOUNDATION

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