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Birth Defects

Disability and Health Programs, National Center on Birth Defects and Developmental Disabilities/CDC

Working within CDC's National Center on Birth Defects and Developmental Disabilities' Division of Human Development and Disability, the mission of the Disability and Health Team is to promote the health, well-being, independence, productivity, and full participation in society by people with disabilities. Program activities include assessing and monitoring the prevalence of disability in the United States; assessing the health status of people with disabilities; describing the risk factors and costs associated with secondary conditions and poor health; developing health promotion interventions to reduce secondary health issues and reduce disparities between people with and without disabilities; evaluate the effectiveness and cost of health interventions; offering training to health professionals who are interested in the field of disability and public health; and supporting conferences to facilitate and stimulate dialogue, disseminate and exchange information, establish research and policy priorities, and outline and undertake next steps.

Review Date: July 13, 2011

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National Center for Chronic Disease Prevention and Health Promotion - NCCDPHP
Centers for Disease Control and Prevention

The CDC's National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) consists of nine divisions that support a variety of activities that improve the nation's health by preventing chronic diseases and their risk factors. Program activities include supporting states’ implementation of public health programs; public health surveillance; translation research; and developing tools and resources for stakeholders at the national, state, and community levels. The Center’s surveillance activities provide data and statistics relevant to each of its program areas.

Review Date: August 09, 2011

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National Center for Environmental Health - NCEH
Centers for Disease Control and Prevention

CDC's National Center for Environmental Health (NCEH) plans, directs, and coordinates a national program to maintain and improve the health of the American people by promoting a healthy environment and by preventing premature death and avoidable illness and disability caused by non-infectious, non-occupational environmental and related factors. NCEH is committed to safeguarding the health of populations that are particularly vulnerable to certain environmental hazards - children, the elderly, and people with disabilities.

Review Date: August 09, 2011

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National Center on Birth Defects and Developmental Disabilities, CDC

The mission of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. The center includes three divisions - the Division of Birth Defects and Developmental Disabilities, the Division of Human Development and Disability, and the Division of Blood Disorders. It works to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities, including blood disorders. NCBDDD seeks to accomplish these goals through research, partnerships, and prevention and education programs. .

Review Date: July 13, 2011

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NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development Information Resource Center

The NICHD is part of the National Institutes of Health (NIH), a component of the U.S. Department of Health and Human Services (DHHS). The NICHD has primary responsibility for conducting and supporting basic, translational, and clinical research in the biomedical, behavioral, and social sciences related to child and maternal health, in medical rehabilitation, and in the reproductive sciences. Information specialists are available to respond to inquiries Monday through Friday, 8:30 a.m. to 4:00 p.m.

Review Date: July 26, 2011

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NIH National Institute of Child Health and Human Development - NICHD

The NICHD is part of the National Institutes of Health (NIH), a component of the U.S. Department of Health and Human Services (HHS). The NICHD has primary responsibility for conducting and supporting basic, translational, and clinical research in the biomedical, behavioral, and social sciences related to child and maternal health, in medical rehabilitation, and in the reproductive sciences. Information specialists are available to answer your calls Monday through Friday, 8:30 a.m. to 4 p.m., EST.

Review Date: February 26, 2013

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Alpha-1- Association

The goal of this nonprofit organization is to further support, education, and research efforts for individuals and their families affected by alpha1-antitrypsin deficiency (A1AD).

Review Date: January 05, 2009

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American Cleft Palate-Craniofacial Association

The American Cleft Palate-Craniofacial Association (ACPA) is an international, non-profit medical society of health care professionals from 30 disciplines and 40 countries who treat and/or research birth defects of the head and face. For more than 50 years, the members of ACPA have served an important role in the multidisciplinary management of children and adults with cleft lip, cleft palate, and craniofacial anomalies. While ACPA's focus is on professional education, such as with its annual scientific meeting, the affiliated Cleft Palate Foundation (CPF) serves to educate the public about facial difference. The Foundation operates the CLEFTLINE (1-800-24-CLEFT), a toll-free referral service for parents and patients, and sends informational packets to callers who request them. Both organizations operate out of the National Office.

Review Date: November 15, 2011

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Angelman Syndrome Foundation

The Angelman Syndrome Foundation is a national 501(c)(3) organization of families, caregivers and medical professionals who care about those with Angelman Syndrome. The foundation’s mission is to advance the awareness and treatment of Angelman Syndrome through education and information, research, advocacy and support for individuals with Angelman Syndrome, their families, and other concerned parties.

Review Date: November 09, 2011

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Angioma Alliance

Angioma Alliance is a non-profit international patient advocacy organization created by people affected by cavernous angioma (cerebral cavernous malformation). The organization works to inform and support individuals affected by CCM while facilitating improved diagnosis and management of the illness through education and research.

Review Date: May 15, 2009

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Association for Glycogen Storage Disease

The Association for Glycogen Storage Disease (AGSD) is a nonprofit support group, established in 1979, for families and persons affected by glycogen storage disease (GSD). AGSD was organized to promote and protect the interests of all persons affected by GSD; to coordinate scientific, educational, and charitable activities related to GSD; to act as a clearinghouse on GSD-related matters; and to publish and distribute material to doctors and other interested persons. AGSD holds a yearly conference focusing on the latest research, care, and treatments available to affected persons.

Review Date: January 06, 2012

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Association for Neuro-Metabolic Disorders

The Association for Neuro-Metabolic Disorders, (ANMD), a non-profit organization, was founded in 1984 at the University of Michigan Medical Center, Ann Arbor. ANMD's primary objective is to serve as an advocate organization for families of patients with neuro-metabolic disorders such as phenylketonuria (PKU), maple syrup urine disease (MSUD), galactosemia and biotinidase. ANMD provides educational information for parents and children; provides networking information on support groups for new parents; supports scientific research into the treatments of neuro-metabolic disorders.

Review Date: March 04, 2009

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Autism Speaks

Autism Speaks is the largest national, private autism organization, founded in 2005 by Bob and Suzanne Wright. Through mergers in the last three years with Autism Coalition Research and Education (ACRE), National Alliance of Autism Research (NAAR), and Cure Autism Now (CAN), Autism Speaks has a collective history of over 30 years of autism experience. Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

Review Date: April 01, 2010

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Birth Defect Research for Children, Inc.

Birth Defect Research for Children, Inc. (BDRC) is a 501(c)(3) non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children. BDRC has a parent-matching program that links families who have children with similar birth defects. BDRC also sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins. Each year, BDRC responds to thousands of birth defect information requests from all over the world. BDRC's on-line environmental health updates provide thousands of parents, professionals and organizations with daily news on the latest birth defect research.

Review Date: February 19, 2013

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CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support

CHERUBS is a volunteer organization that provides support, information and resources related to Congenital Diaphragmatic Hernia (CDH). Membership in the organization is open to adult survivors and parents of children born with CHD. The organizations is funded by charitable donations and sponsors.

Review Date: February 06, 2009

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Children's Craniofacial Association

Children's Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas,Texas, dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA's mission is to empower and give hope to individuals and families affected by facial differences.

Review Date: April 21, 2011

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Children's PKU Network

Children's PKU Network is a nonprofit agency founded in 1991 by the parents of a child diagnosed with PKU (Phenylketonuria). The agency offers support through various programs to assist families with newly diagnosed infants with PKU and other metabolic disorders. A referral service serves as a medium for sharing information on obtaining needed services. A Maternal PKU Express Pack is available to women with PKU. PKU is a rare metabolic disorder that affects approximately 1 in every 15,000 births in the United States. Although not curable, PKU is treatable by adherence to a strict diet, devoid of fats and aspartame.

Review Date: February 20, 2009

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Cleft Palate Foundation

The Cleft Palate Foundation (CPF) is a nonprofit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects. It is the public service arm of the American Cleft Palate-Craniofacial Association. Callers can request information about cleft palate/craniofacial treatment teams and parent-patient support groups in their local region. In addition, the CPF provides the following services: comprehensive information to educate patients, families, and professionals; telephone and online counseling and support service through the Cleftline 1-800-24-CLEFT (1-800-242-5338); research to learn about prevention and care; Cleftline Teddy Bears with repaired cleft lips; advocacy for family-centered team care; and, awards for a minimum of three $500 college scholarships each year to young adults affected by cleft and craniofacial birth defects.

Review Date: February 26, 2013

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Congenital Heart Information Network

C.H.I.N. is a national organization that provides reliable information, advocacy, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, and adults with congenital heart defects.

Review Date: June 12, 2012

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Dysautonomia Foundation

The Dysautonomia Foundation is an international organization created in 1951, to provide services for patients with Familial Dysautonomia, a Jewish genetic disorder. We support a Treatment and Evaluation Center at NYU Medical Hospital in NYC as well as a satellite center at Hadassah Hospital - Israel. The Foundation funds research into FD leading to a cure. It also offers support services to families including information on Treatment and Research.

Review Date: October 12, 2011

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Dysautonomia Information Network

The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization. Its mission is to raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.

Review Date: March 20, 2013

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Dysautonomia Treatment and Evaluation Center

The Dysautonomia Treatment and Evaluation Center is maintained and supported by the Dysautonomia Foundation, a nonprofit organization founded in 1951, through its 16 local chapters throughout the United States, Canada, and Great Britain. The Center specializes in the diagnosis and treatment of familial dysautonomia, although they will respond to inquiries on other pediatric patients suspected of having a variant of this disorder or another of the congenital sensory neuropathies. While its primary goal is treatment, data on specific manifestations are accumulated and stored. The Center has a 24-hour telephone answering service and will make referrals. At present over 400 patients with familial dysautonomia are registered. The prevalence rate is one in 3,600 people of Ashkenazi Jewish extraction.

Review Date: August 26, 2008

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Dysautonomia Youth Network of America, Inc.

Founded in 1999 and professionally certified as a 501(c) (3) non-profit organization in 2002, the Dysautonomia Youth Network of America, Inc. (DYNA) is the first and only 501(c) (3) non-profit organization in existence specifically for childhood/adolescent/young adult onset dysautonomia conditions. The organization proudly serves patients, caregivers, families, physicians, researchers, educators and the public at large. Most DYNA members reside in the United States but some members hail from as far away as Australia, New Zealand, Scotland, England, South America, and Singapore. In addition to members reflecting the geographical diversity of dysautonomia conditions, they also reflect the diversity of dysautonomia conditions themselves. Members have a host of conditions such as: Post-Viral Dysautonomia, Generalized Autonomic Failure, Neurocardiogenic Syncope (NCS)/Vasovagal Syncope, Postural Orthostatic Tachycardia Syndrome (POTS), Neurally Mediated Hypotension (NMH), Post-Viral Dysautonomia, Non-Familial Dysautonomia and Multiple System Atrophy.

Review Date: February 26, 2013

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FACES: The National Craniofacial Association

FACES: The National Craniofacial Association is a non-profit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. There is never a charge for any service provided. FACES provides financial assistance for expenses incurred while traveling away from home to a craniofacial center for reconstructive surgery and/or evaluation, based on financial and medical need of the family. FACES furnishes information about craniofacial centers and publishes a brochure which further details the scope of our organization. FACES provides referrals to other available resources and organizations, maintains up-to-date information on specific diseases or birth defects, and assists in getting families in touch with other families who have a child with the same disorder.

Review Date: May 31, 2011

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Foundation for Faces of Children

The Foundation for Faces of Children (FFC) is a New England-based, non-profit organization, and a national source of information about craniofacial conditions. FFC is dedicated to improving the lives of children with craniofacial conditions, including cleft lip and palate and other head and facial anomalies. The organization concentrates its efforts on education, training, family support systems, and the dissemination of accurate information. FFC also funds targeted research about the causes, treatments, and outcomes of these conditions. Additional services provided by FFC include (1) a scholarship program for young adult residents of New England who were born with a facial difference and are pursuing post-secondary education, (2) a Web site containing medically reviewed information about the major craniofacial conditions and a host of other information of interest to parents and patients, and (3) a video about cleft lip and palate.

Review Date: April 21, 2011

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Hydrocephalus Association

Founded in 1983, the Hydrocephalus Association is a national non-profit organization. Our mission is to eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy for individuals, families and professionals dealing with the complex issue of the condition. Families are empowered with educational materials, informed about the latest research, and have access to quality health care. The association advocates for increased research and funding to advance understanding, improve diagnosis and treatment, and find a cure.

Review Date: February 14, 2013

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Klippel-Trenaunay Syndrome Support Group

The Klippel-Trenaunay Syndrome Support Group's mission is to provide support for K-T Syndrome patients and their families. Their objectives in accomplishing this mission are: to act as a support group for sharing experiences and information; to provide a clearinghouse for correspondence between members; and to maintain a list of current medical literature pertaining to K-T Syndrome and to make it available to members and professionals. There is no membership fee. The group is supported by donations.

Review Date: December 07, 2010

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Little People of America, Inc.

Little People of America, Inc. will provide support and information to people of short stature, (dwarfism), and their families. Primary membership usually is offered to those people who are around 4’10” in height as an adult. LPA is a non-profit, member run organization founded in 1957. LPA will assist those who have a diagnosis of dwarfism with their physical and developmental concerns resulting from short stature. LPA offers information on employment, education, disability rights, adoption of short statured children, medical issues, clothing, adaptive devices and parenting tips. Information is provided through hundreds of dedicated volunteers throughout the U.S. as well as through a national newsletter “LPA Today,” chapter, and district newsletters. LPA also provides opportunities for social interaction at chapter, district, regional meetings, national conferences, and participation in athletic events. LPA, Inc. provides educational scholarships, medical assistance grants, access to our medical advisory board, and funds for publications and other projects.

Review Date: January 12, 2011

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March of Dimes Birth Defects Foundation

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies®, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. The March of Dimes carries out their mission by investing in research and educating health care professionals, pregnant women and new moms. They also are there with support for families with a baby in newborn intensive care. For the latest resources and information, visit marchofdimes.com or nacersano.org.

Review Date: June 17, 2008

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National Birth Defects Center

Established in 1984, the Center provides diagnosis and treatment to children born with Birth Defects, Genetic Diseases and Mental Retardation. The Center consists of physicians and consultants in pediatrics, genetics, orthopedics, cardiology, neurology, ophthalmology, endocrinology, craniofacial surgery, plastic surgery, and other specialties. The Center houses the Pregnancy Environmental Hotline, a toll-free service which provides information concerning the effects that drugs, medications, radiation, infections, or environmental agents may have on the fetus.

Review Date: August 27, 2008

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National Council on Folic Acid

The National Council on Folic Acid (NCFA) is a coalition of national organizations and associations, state folic acid councils and government agencies whose mission is to improve health by promoting the benefits and consumption of folic acid.

Review Date: March 02, 2011

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National Down Syndrome Congress

The National Down Syndrome Congress (NDSC), founded in 1974, promotes the welfare of people with Down syndrome and their families. Made up of parents, professionals, and other interested persons, the NDSC advocates for the improvement of human services and civil rights for people with Down syndrome, encourages research, and promotes public understanding of the condition. It also serves as a clearinghouse for information on the syndrome.

Review Date: November 04, 2010

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National Down Syndrome Society

The National Down Syndrome Society (NDSS) envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome. The mission of NDSS is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. NDSS serves individuals with Down syndrome and their families, as well as health care professionals, educators and others who work to provide services to this population, and the general public. The Society publishes and distributes information pamphlets and clinical care booklets; produces educational videos; and sponsors scientific symposia and national and international conferences on Down syndrome. Information and referrals are provided on an 800 hotline, and free information packets are available. NDSS and the Down syndrome community celebrate National Down Syndrome Awareness Month each October and established the Buddy Walk program to promote acceptance and inclusion of all people with Down syndrome.

Review Date: December 29, 2010

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National Foundation for Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias, (NFED), was organized in order that accurate information on ectodermal dysplasias (ED) would be available to patients and their families dealing with this rare disorder. The Foundation's goals are to locate parents of ED children or adults affected by ED and to provide them with information and support, to assist the medical community in treating ED patients, to distribute financial assistance for medical and dental care and scholarships when possible, to aid families with the acquisition of insurance benefits, to provide referral services, and to assist with research projects. NFED is funded by donations.

Review Date: August 26, 2008

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National Organization for Vascular Anomalies

Hemangioma Newsline became The National Organization of Vascular Anomalies in 2004 and is a non-profit organization established under IRS code 501c3a. The organization is dedicated to aiding individuals in the management and care of hemangioma and other vascular tumors and vascular malformations.

Review Date: November 10, 2011

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National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communications. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC. Growth and development within the profession and the recognition of a unique identity provided the impetus for the formation of a responsive professional society. To that end, the National Society of Genetic Counselors was incorporated in 1979. The National Society of Genetic Counselors advances the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services.

Review Date: January 27, 2012

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National Urea Cycle Disorders Foundation

The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals. Founded in 1988, the Foundation is operated and supported by the volunteer efforts of families with children suffering from UCDs and is a supportive network of families, friends, and medical professionals.

Review Date: January 27, 2012

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Nevus Network

The Nevus Network, founded in 1983, is a support group to provide help and understanding to families whose lives have been touched by large birthmarks, called giant congenital nevi and a related condition called neurocutaneous melanosis. They attempt to place new contacts in touch with other members who have similar conditions. The services of the Nevus Network are free of charge.

Review Date: April 29, 2011

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Shriners Hospitals for Children

Shriners Hospitals is a network of 22 pediatric speciality hospitals that provide free orthopaedic and burn care to children under the age of eighteen. There are 18 orthopaedic Shriners Hospitals, three Shriners Hospitals dedicated to treating children with burns and one Shriners Hospital that provide burn and spinal cord injury care. The Hospitals accept neither government funds nor insurance monies; all care is paid for entirely by Shriners Hospitals. Shriners hospitals serve as a valuable resource for families whose children need specialized expert care but who cannot afford it.

Review Date: March 20, 2011

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Sotos Syndrome Support Association

The Sotos Syndrome Support Association (SSSA) was organized in 1988 to provide a support network for families and individuals affected by the syndrome. Sotos syndrome, also known as cerebral gigantism, is a neurological brain-based disorder resulting in physical and mental developmental delays in children. The goals of the SSSA are to provide a social support environment for families and individuals with Sotos syndrome; increase public awareness and education about the disorder; and provide opportunites for professionals working with affected individuals to collect and share data for research. The SSSA has members across the United States, Canada and Great Britain, and sponsors an annual conference.

Review Date: August 13, 2010

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Support Organization for Trisomy 18, 13 and Related Disorders

Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in trisomy 18, 13, and related chromosomal disorders. Support is provided during prenatal diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision in alliance with a parent-professional partnership. Annual Conference with free medical clinics.

Review Date: July 21, 2010

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The Myelin Project

The Myelin Project is a non-profit organization, the goal of which is to accelerate research on the remyelination of the central nervous system. Successful research in this area will help those suffering from insufficient myelin and demyelinating disorders; i.e. Multiple Sclerosis, Guillain-Barre Syndrome and the leukodystrophies. The leukodystrophies are a group of genetically transmitted diseases in which abnormal metabolism of myelin constituents leads to progressive demyelination. The Project can provide literature relating to the above named diseases, and describing their research efforts, and its progress. The organization will also conduct literature searches relating to myelin diseases upon request. Some material are available in Italian, French and German. All services are extended to patients, professionals, and the general public. The organization will respond to inquiries made either by mail, telephone or electronic mail.

Review Date: April 29, 2011

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The Vascular Birthmarks Foundation

This is an international charitable organization that provides support and informational resources for individuals affected by hemangiomas, port wine stains and other vascular birthmarks and tumors, and sponsors relevant research. The Vascular Birthmark Foundation maintains a web site where users can find information concerning the two primary categories of vascular birthmarks: hemangiomas, a benign tumor most common in infants and vascular malformations which are often confused with hemangiomas.

Review Date: March 30, 2011

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Williams Syndrome Association, Inc.

The Williams Syndrome Association, Inc., is a national, non-profit organization whose purpose is to provide support and the latest medical and educational information to individuals with Williams Syndrome and their families. WSA also strives to increase awareness and knowledge of Williams Syndrome among the professional community and the general population. Williams Syndrome is a rare, genetic disorder which is present at birth and affects males and females equally. It can occur in all ethnic groups and has been identified in countries throughout the world. Inquiries are accepted by the WSA via telephone, mail, electronically or in person.

Review Date: April 12, 2011

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