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About the Project |
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Events & Egroup |
| Focus on the Family |
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Resources |
| Creating Change |
| Updates |
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Disability Specific
Sometimes it is nice to connect with a family that has had similar experiences or an organization that is specifically focused on issues that are affecting your family. There are many organizations that can provide information, resources and support related to specific disability labels and issues. The following is a list of organizations that support families and individuals with disabilities. DisabilityInfo.gov On August 28, 2002, President George W. Bush issued an Executive Memorandum as part of his New Freedom Initiative which direct federal agencies to work together to build a one-stop interagency web portal for people with disabilities, their families, employers, service providers, and other community members. DisabilityInfo.gov is a comprehensive online resource specifically designed to provide people with the information they need to know quickly. This site provides access to disability-related programs available across the government on numerous subjects including civil rights, education, employment, housing, health, income support, technology, transportation and community life. |
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Attention Deficit Disorder (ADD)/Attention Deficit Hyperactivity Disorder (ADHD)
301-475-6603 email: Christina_bishop@co.saint-marys.md.us Families and professionals working with children with ADHD are welcome to participate in weekly support meetings at the Chancellors Run Regional Park in the Senior Lounge on Thursdays beginning June 13th. Meetings will be held from 6:30-8:30 p.m. and are free. Members must register quarterly. Behavior Consultation Clinic This clinic operates under the Baltimore County Health Department and provides diagnosis, treatment, information, education, and parent support. CHADD Phone: (800) 233-4050; (301) 306-7070 CHADD is a nonprofit organization that provides information and support regarding Attention Deficit/Hyperactivity Disorder. Kennedy Krieger Institute Phone: (888) 554-2080 Kennedy Krieger Institute is a facility dedicated to improving the lives of children, adolescents and young adults through comprehensive patient care, education and research. KKI provides diagnosis, evaluation, education, and treatment information for children with AD/HD. Mt. Washington Pediatric Hospital Phone: (410) 367-2222 The Mt. Washington hospital provides inpatient and outpatient services and provides specialized treatment programs for children with AD/HD. One A.D.D. Place A virtual neighborhood consolidating in ONE PLACE information and resources relating to Attention Deficit Disorder (A.D.D.), AD/HD and Learning Disorders (LD). This site has a store, a library, professional services, and books/tapes/products. |
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Autism, Asperger Syndrome and Pervasive Developmental Disorder (PDD)
The Maryland Autism Medicaid Waiver
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Bipolar Disorder
The Child and Adolescent Bipolar Foundation (CABF) is a parent-led, not-for-profit, web-based membership organization. The on-line community includes parents, researchers, medical doctors, neuroscientists, social workers, therapists, civic leaders, teachers, and others.
Get some general information on early-onset bipolar disorder. The authors will also be updating this area regularly with new articles that you can receive via email. |
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Blind/Low Vision
This service agency specializes in providing help that is not readily available from government programs or existing service systems. Services are planned especially to meet the needs of blind children, the elderly blind and the deaf-blind. Outreach volunteers throughout the U.S. provide services to people in their home localities. Blind Industries and Services of Maryland Blind Industries and Services of Maryland is leading the way to greater opportunity for Maryland citizens who are blind or visually impaired. National Federation of the Blind The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. The NFB has affiliates in all fifty states plus Washington D.C. and Puerto Rico, and over seven hundred local chapters. Maryland Resources for People with Visual Impairments A comprehensive listing of resources for individuals with low vision or blindness. Maryland State Library for the Blind and Physically Handicapped The library lends books and over 70 popular magazines on a wide range of subject interests in Braille, recorded on discs and cassettes and in large type. This is a free statewide service. Library selections can be sent to you by U.S. mail. National Federation of the Blind The National Federation of the Blind provides information and education regarding blindness. The NEWSLINE® Program (866)504-7300 Developed by the National Federation of the Blind, NEWSLINE® is a free service used by blind subscribers to read newspapers through any touch-tone telephone. The service offers subscribers over fifty newspapers from across the country. Aavailable throughout the country, 24 hours a day, seven days a week. Visual Impairment Guide This site contains information topics pertaining to parenting and teaching a child with visual impairments. |
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Brain Injury
The Brain Injury Association of Maryland provides a variety of services including an information line, a list of available programs, and advocacy services. Traumatic Brain Injury in the United States: Assessing Outcomes in Children This section summarizes existing measures for assessing outcomes and describes their applicability to studies of TBI. |
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Cerebral Palsy
Kennedy Krieger Institute is a facility dedicated to improving the lives of children, adolescents and young adults through comprehensive patient care, education and research. KKI provides diagnosis, evaluation, education, and treatment information for children with cerebral palsy. United Cerebral Palsy United Cerebral Palsy's national office provides information and legislative advocacy, as well as program development and technology and research initiatives. |
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Cystic Fibrosis
The Cystic Fibrosis Foundation provides information regarding all aspects of Cystic Fibrosis. |
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Deaf/Blind
This project delivers technical assistance and training throughout Maryland for children with deaf-blindness. American Association of the Deaf-Blind (AADB) is a national consumer advocacy organization for people who have combined hearing and vision impairments. DB-LINK National Information Clearinghouse On Children Who Are Deaf-Blind (DB-LINK) is a federally funded information clearinghouse focused on identifying, coordinating, and disseminating information related to children (0 - 21) who are deaf-blind. Helen Keller National Center The Helen Keller National Center provides a training facility as well a variety field services throughout the country for individuals who are deaf and blind. Maryland Relay With Maryland Relay, people who are Deaf, Hard of Hearing, DeafBlind or Speech Disabled can easily communicate through TTY (text telephone) with anyone using a standard phone! Metropolitan Washington Association of the Deaf-Blind [MWADB] MWADB is a social, nonprofit organization of, for, and by deaf-blind people. Its purpose is to encourage, recognize and promote the needs of deaf-blind people in the metropolitan Washington, DC area in the areas of economic security, social equality, access to community resources, and privileges as citizens. National Family Association for Deaf-Blind (NFADB) The National Family Association for Deaf-Blind (NFADB) is a national organization that advocates for all persons who are deaf-blind, supports national policy to benefit people who are deaf-blind, encourages the founding and strengthening of family organizations in each state and collaborates with professionals who work with persons who are deaf-blind. |
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Deaf/Hearing Impaired Maryland Relay With Maryland Relay, people who are Deaf, Hard of Hearing, DeafBlind or Speech Disabled can easily communicate through TTY (text telephone) with anyone using a standard phone! Maryland School for the Deaf Maryland School for the deaf provides in-home parent support for parents of infants and toddlers and referral to other resources. The Metropolitan Washington Deaf Community Center, Inc. Devoted to promoting the welfare of deaf persons. All individuals interested in MWDCC goals are welcome to become a member. Check the web site for listings of support groups and activities around the state. The National Association of the Deaf The National Association of the Deaf provides a variety of programs through their affiliates as well as information and advocacy for individuals who are deaf and hard of hearing. |
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The Arc of Maryland |
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Down Syndrome Andrews Parents of Children with Down Syndrome (PODS) Phone: (301) 918-8526 PODS provides support to new and expectant parents who have learned that their child has Down syndrome. Anne Arundel Parents of Children with Down Syndrome Phone: (410) 349-0915 PODS provides support to new and expectant parents who have learned that their child has Down syndrome. Chesapeake Down Syndrome, Inc. 604 Worcester Road Townson, MD 21286 Chesapeake Down Syndrome Parent Support Group This group holds monthly meetings to discuss medical, educational, social, and political concerns. Parent education packet for families of newborns with Down Syndrome is available. Creating Solutions This online newsletter provides information and resources for persons interested in issues related to Down Syndrome. Downs Syndrome Educational Trust The Down Syndrome Educational Trust works around the world to improve the development, education and social achievements of many thousands of people living with Down syndrome. We undertake and support scientific research and disseminate quality information and advice widely through our web sites, books, films and training courses. Down Syndrome: Health Issues This website which was created by pediatrician and parent of a child with Down Syndrome contains articles on health issues related to Down Syndrome as well as links to other sites on the Internet and information on controversies in the Down Syndrome community. Down Syndrome Information Network The Down Syndrome Information Network offers a range of information resources and online services to the international Down syndrome community. It aims to provide information and services for families, carers, professionals and researchers. Down Syndrome on the Internet Down Syndrome on the Internet provides a variety of resources available to families and individuals with Down Syndrome. Down Syndrome Quarterly Down Syndrome Quarterly is an interdisciplinary journal devoted to advancing the state of knowledge on Down syndrome and covers all areas of medical, behavioral, and social scientific research. It is published in March, June, September, and December and is distributed by subscription to individuals, organizations, and libraries. Down Syndrome Resource Network of Howard Country Phone: (410) 730 4266 A committee of the ARC of Howard County. We are based in Howard County, Maryland and exist to help meet the needs of individuals with Down Syndrome and their families. Eastern Shore Down Syndrome Parent Support Group Contact: Kim Spotts (410) 860-9496 kdwspotts@aol.com This is a newly formed group and a recent recipient of a grant from the Family NET Works project. Friends of Frederick County Family Resource Information Education Network for Down Syndrome, a group of parents of children with Down Syndrome who support each other as well as new and expectant parents. National Down Syndrome Congress National Down Syndrome Congress is a national advocacy organization for Down syndrome which provides leadership in all areas of concern related to persons with Down syndrome. National Down Syndrome Society This national nonprofit organization seeks to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life., NDSS promotes public awareness about Down syndrome and seeks to discover its underlying causes through research, education and advocacy. Down Syndrome Network of Montgomery County The Down Syndrome Network of Montgomery County, Maryland is an organization of families with a child with Down Syndrome, adults with Down Syndrome, medical professionals and others who serve people with Down Syndrome, and government service providers. Recommended Down Syndrome Sites on the Internet An extenstive list of links to resources and information available on the Internet. Sourcebook on Down Syndrome This sourcebook was created for parents to provide information and Internet-based research covering virtually all topics related to Down Syndrome, from the essentials to the most advanced areas of research. Topics in Down Syndrome A series of books on issues related to Down Syndrome published by Woodbine House. |
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Eating Problems F.R.I.E.N.D.S. - Feeding Related Issues & Eating Disorders Support Group |
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Epilepsy
Provides information and resources to people with epilepsy, their families, researchers, educators, and caregivers in order to enhance quality of life. Just enter your zip code and find a local Foundation near you. |
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General Support
Advocates for Children and Youth in Maryland focuses on issues related to all Maryland children. They provide researched based solutions in the areas of child welfare, early childhood, education, health, juvenile justice, economic well being, and after school issues. Inclusion Research Institute The primary mission of IRI is to research, develop and disseminate innovations that enable persons of all ages, including individuals with disabilities or other disadvantages, to be independent, productive and included in schools, communities, and places of employment. March of Dimes Funds programs including the areas of research, community services, education and advocacy. Maryland Association of Resources for Families and Youth (MARFY) MARFY provides training, conferences, newsletters, and daylong seminars throughout the state. Maryland Council for Inclusive Education (MCIE) MCIE is a nonprofit organization dedicated to the inclusion of children with disabilities in their neighborhood schools. Maryland Disabilities Law Center Advocates for the interests of people with disabilities in Maryland. Provides low-cost legal assistance. Maryland State Department of Education Maryland State Department of Education offers all types of information regarding education in the state of Maryland including: school performance reports, new information, news releases, an overview of Maryland Special Education and various links for families and professionals. National Rehabilitation Information Center [NARIC] NARIC is a library and information center on disability and rehabilitation. Funded by the National Institute on Disability and Rehabilitation Research (NIDRR), NARIC collects and disseminates the results of federally funded research projects. The collection also includes commercially published books, journal articles, and audiovisuals. Parents Place of Maryland A statewide, parent-directed resource center whose sole purpose is to enhance the ability of all individuals with disabilities to participate as fully as possible in the home, school and community. There are regional offices to serve the needs of parents in different locations throughout the state of Maryland. Paul H. Brookes Publishing Co. Brookes publishes resources in the following fields: early childhood, early intervention, inclusive and special education, developmental disabilities, learning disabilities, communication and language, behavior and mental health. Titles range from graduate- and undergraduate-level textbooks, professional references, and practical resources to curricula, assessment tools, and family guidebooks and videos. The Resource Network A Project of Kennedy Krieger Institute This site shares resources on developmental disabilities throughout the state of Maryland, compiling educational information to increase knowledge for families, children and youths with developmental disabilities, as well as professionals. Today's Caregiver Magazine Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Web site features topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver Magazine, chat rooms and an online store which is currently in development. Caregiver Media Group and all of its products are developed for caregivers, about caregivers and by caregivers. The Virtual World Congress on Disabilities A website for people with disabilities offering the latest information and products in the disability and special needs arena as well as the opportunity to communicate with others in similar situations through bulletin boards and chats. The World Congress & Exposition on Disabilities (WCD) has become the leading event for the exchange of information and ideas on today's most important issues for people with disabilities, their caregivers, as well as healthcare professionals, educators, physical education specialists, government agencies, organizations, and professional societies involved in their care and development. |
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Genetic Disabilities/Rare Disorders/Diseases
The Foundation can put you in touch with Local Contacts within your region. Regional Representatives are also available to answer questions, and are coordinators of social gatherings and mini-conferences. 11th Chromosone Abnormalities The mission of this web site is to provide support and organizational efforts for the parents, as well as friends and family, of all children with 11th chromosome abnormalities, including deletions (monosomy), duplications (trisomy) and translocations. FRAXA Research Foundation A nonprofit charity run by parents of children with fragile X syndrome. FRAXA's goal is to accelerate research aimed at the treatment and cure of fragile X, by direct funding of promising research projects and by raising awareness. Offers a variety of publications and a CD-Rom providing facts, educational strategies and medications to treat this disorder. The Genetic Alliance The Genetic Alliance provides information regarding genetic conditions. Joubert Syndrome Foundation Corp. The Joubert Syndrome Foundation Corp. is an international network of parents who share knowledge, experience, and emotional support. The group offers a networking list, newsletter, and a biennial conference. The Joubert Syndrome Foundation Corp. plays an important role in educating physicians and their support teams as well as increasing public awareness. Maryland Fragile X Resource Group The Maryland Fragile X Resource Group is a community of families in and around the Washington-Baltimore metro area that have children affected by Fragile X Syndrome. We are a very active group providing mutual support and education, promoting awareness of Fragile X and actively participating in funding research on Fragile X. The National Fragile X Foundation Nonprofit organization dedicated to increasing awareness and education about this disorder, supporting research, assisting families and encouraging collaboration among professional involved with fragile X syndrome. The National Organization for Rare Disorders The National Organization for Rare Disorders provides a variety of information regarding prevention, treatment and cure of rare diseases. Sillwee Wobbert Picture Book Series Picture books about children's medical conditions that help both kids and adults ask more questions and learn more about their health. The Sillwee Wobbert book series represent new and uplifting stories that inspire more education with loved ones and friends about illnesses, and improves the communication with medical personnel The United Mitochondrial Disease Foundation UMDF is redefining hope for families affected by mitochondrial diseases -- hereditary disorders, now considered as common as childhood cancers, that affect the cell's ability to produce life-sustaining energy. UMDF offers support to all sufferers of mitochondrial disorders regardless of diagnosis, suspected or confirmed. Our mission is to promote research for the cure and treatment of mitochondrial diseases and to provide support to affected families. |
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Hydrocephalus
The Hydrocephalus Association provides personal support for families and individuals, education, and advocacy. |
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Learning Disabilities
The Feingold Association promotes dietary practices for better behavior and learning. Learning Disability Association of Maryland The Learning Disability Association of Maryland provides families and individuals with information regarding learning disabilities, as well as a listing of local chapters. LDonline LD online is an interactive website for families of children with learning disabilities. National Center for Learning Disabilities An online guide to essential information about learning disabilities, early literacy and learning resources, support for adolescents and adults with learning disabilities, public policy and advocacy tools. |
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Mental Health Black Mental Health Alliance The guiding principles of the Black Mental Health Alliance for Education and Consultation, Inc. (BMHA) are concern for others, integrity, respect for diversity and empowerment. BMHA promotes appropriate mental health care, service delivery and theoretical understanding of all the mental health programs. Caring Hands, Inc. Provides permanent residential services for adults with mental and/or physical disabilities. Also provides short-term housing and care through the Respite Care Program. Serves both adults and children. The Center for Mental Health Services Knowledge Exchange Network (KEN) KEN staff are skilled at listening and responding to questions from the public and professionals. KEN staff quickly direct callers to Federal, State, and local organizations dedicated to treating and preventing mental illness. KEN also has information on Federal grants, conferences, and other events. Depression and Related Affective Disorders Association (DRADA) The mission of DRADA is to alleviate the suffering arising from depression and manic depression by assisting self-help groups, providing education and information, and lending support to research programs. The National Alliance for the Mentally Ill The National Alliance for the Mentally Ill is an advocacy organization that provides information on a variety of Mental Illnesses. Families Involved Together Phone: (410) 423-5222 A network of parents whose children have emotional, behavioral, or mental disorders. Federation of Families for Childrens Mental Health A National parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families. Key Point Health Services, Inc. Providers of a variety of mental health services to include: Out Patient Clinic, Day Psychiatric Program, Residential Services, Out Reach Services, Mental Health Service Coordination, and Forensic Services Maryland Coalition of Families for Children's Mental Health The Maryland Coalition of Families for Children's Mental Health is a grassroots coalition of family and advocacy organizations dedicated to: improving services for children with mental health needs and their families and building a network of information and support for families across Maryland. Mental Health Association of Maryland The Mental Health Association of Maryland provides advocacy, education, research and service to the state of Maryland regarding Mental Illnesses. National Depressive and Manic-Depressive Association The mission of the National Depressive and Manic- Depressive Association is to educate patients, families, professionals, and the public concerning the nature of depressive and manic-depressive illness as treatable medical diseases; to foster self-help for patients and families; to eliminate discrimination and stigma; to improve access to care; and to advocate for research toward the elimination of these illnesses. PLAN (Planned Lifetime Assistance Network) PLAN provides case management services for a fee. Its objective is to take over many of the services that family members have been trying to provide. PLAN helps now, and assures continued help after parents are gone, become disabled themselves, or simply are "burned out". Project HOME Provides help for mentally ill and/or adults who need supportive housing arrangements in order to live in the community. Sheppard Pratt Provides comprehensive mental health services to citizens of all ages. Individual and group psychotherapy offered. Upper Chesapeake Medical Center We provide a safe environment for those in need of acute psychiatric care. Patients receive a comprehensive evaluation and intensive multidisciplinary treatment to facilitate their reentry into the community. Villa Maria Behavioral Health Clinic Provides community-based programs and out-patient therapy to individuals, families, and children. School-based mental health services available for children. Psychiatrists available for medication management. Sliding fee scale available. Call for details. |
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Mitochondrial and Metobolic Diseases
Our mission is clear...to connect and network with FOD Families and Professionals across the world and to provide emotional support, Family Stories, practical information about living with these disorders, and Medical Updates to inform families of new developments in diagnosis, research and treatment.
The United Mitochondrial Disease Foundation is redefining hope for families affected by mitochondrial diseases -- hereditary disorders, now considered as common as childhood cancers, that affect the cell's ability to produce life-sustaining energy. UMDF offers support to all sufferers of mitochondrial disorders regardless of diagnosis, suspected or confirmed. Our mission is to promote research for the cure and treatment of mitochondrial diseases and to provide support to affected families. |
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Special Health Care Needs
Resources and networking opportunities to help children with chronic, life-threatening illnesses or disabilities. Nationwide directory for health care resources. Family Doctor - American Academy of Physicians Fact sheets on more than 500 health related issues. Family Voices This project of the Parents’ Place of Maryland is a statewide grassroots network of families and friends speaking on behalf of children and youth with special health care needs and providing support, advocacy, information and resources about health care systems and related resources in Maryland. Medical Home Initiatives for Children with Special Health Care Needs Provides support to physicians, families and medical providers and non-medical providers who care for children with special needs so that they have access to medical care at home. Sillwee Wobbert Picture Book Series Picture books about children's medical conditions that help both kids and adults ask more questions and learn more about their health. The Sillwee Wobbert book series represent new and uplifting stories that inspire more education with loved ones and friends about illnesses, and improves the communication with medical personnel. |
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Speech and Language The Hearing and Speech Agency The Hearing and Speech Agency offers speech-language therapy and audiology services, as well as a centralized interpreter referral service. Loyola College Department of Speech-Language, Pathology and Audiology Maryland Society for Cleft Lip and Palate Children Towson University, Speech-Language-Hearing Clinic |
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Spina Bifida
The Spina Bifida Association strives to prevent spina bifida and enhance the lives of individuals with spina bifida. |
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Spinal Cord Injury
The Christopher Reeve Paralysis Foundation supports research regarding spinal cord injuries. National Spinal Cord Injury Association The National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to helping the hundreds of thousands of Americans suffering the catastrophic results of spinal cord injury and disease. |
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Stroke
The American Heart Association is a not-for-profit, voluntary health organization funded by private contributions. Its mission is to reduce disability and death from cardiovascular diseases and stroke. These include heart attack, stroke (brain attack) and related disorders. American Stroke Foundation The mission of the American Stroke Foundation is to support stroke survivors, their families, caregivers and friends by providing resources, services, education and information that improves the quality of life. National Stroke Association NSA serves the public and professional communities -people at risk, patients and their health care providers, stroke survivors, and their families and caregivers. NSA has a variety of innovative and high impact programs. |
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Tourette Syndrome Tourette Syndrome "Plus" Tourette Syndrome Association, Inc. Tourette Syndrome Fact Sheet |
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Tuberous Sclerosis
This nonprofit organization provides support to families who are affected by Tuberous Sclerosis. |
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Women with Disabilities
The National Women's Health Information Center is for women with disabilities or for women who care for others with disabilities. |
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