Medical
National Center for Medical Homes
The National Center of Medical Home
Initiatives for Children with Special Needs provides support to physicians,
families, and other medical and non-medical providers who care for children
with special needs so that they have access to a medical home. Information is
provided about grantees (including the
The Starbright Foundation is dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis. Starbright projects address the core issues that accompany illness –- the pain, fear, loneliness, and depression that can be as damaging as the sickness itself.
Medical Conditions
Canine Companion for Independence
The most advanced technology capable of transforming the lives of people with disabilities has a cold nose and a warm heart. Canine Companions for Independence® provides highly-trained assistance dogs for children and adults with disabilities, free of charge.
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
The Medical Genetics Department at the University of Kansas Medical Center web site contains information on genetic conditions and birth defects. This site also includes support groups and individualized information on specific diagnoses.
Hereditary Neuropathy Foundation (HNF)
The Hereditary Neuropathy Foundation (HNF) is dedicated to finding a cure for Charcot-Marie-Tooth disease (CMT) while providing support and services for those living with CMT and their families. HNF promotes and supports both clinical and primary CMT research. They educate physicians, along with the entire medical community about CMT. The HNF web site, innovative and highly proactive, is committed to presenting up-to-date information, resources, support, international discussion forums, Q & A's, along with numerous helpful products and services that are available to individuals living with CMT.
Diagnosis A-Z
Institute for Child Health Policy
The Institute for Child Health Policy focuses its attention on children in managed care, with special a emphasis on children with special health care needs. Their mission is to improve the health status of infants and children by integrating resources to assist in the formulation and evaluation of health policies, programs and systems.
Arthritis
American Juvenile Arthritis Organization
The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions
Cerebral Palsy
The United Cerebral Palsy National Office, located in Washington, D.C., provides direct support to the affiliates via fundraising, marketing and communications, best practices, and programmatic support to name a few. We also serve people with disabilities and their families through the development of forward-thinking programs, information and referral service, legislative advocacy, technology initiatives and research.
Blood Disorders
The American Diabetes Association is leading the fight against the deadly consequences of diabetes and fighting for those affected by diabetes. The Association funds research to prevent, cure and manage diabetes; delivers services to hundreds of communities; provides objective and credible information; and gives voice to those denied their rights because of diabetes.
Education for Patients and medical professionals about news, research updates and resources.
National Hemophilia Foundation
The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country.
World Federation of Hemophilia
The World Federation of Hemophilia (WFH) is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders.
The Hemophilia Federation of America
The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.
LA Kelley Communications was founded on the belief that anyone facing hardship, adversity or challenges – when given the right tools – can overcome, triumph, and even grow in character and confidence.
The Coalition for Hemophilia B
The Coalition is guided by a board composed of researchers, doctors, lawyers, parents and patients. The outreach to the medical community is handled through a small Scientific Advisory Board. The Coalition is supported by a gift from Joyce and John Taylor and accepts gifts from corporate and individual donors. The commitment of the Coalition is to continue to instigate and support scientific research, product development, patient information and advocacy is ongoing.
Juvenile Diabetes Research Foundation
JDRF is the leader in research leading to a cure for type 1 diabetes in the world. It sets the global agenda for diabetes research, and is the largest charitable contributor and advocate of diabetes science worldwide.
The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services.
Birth Defects and Sids
American Sudden Infant Death Syndrome Institute
Founded in 1983, the American SIDS Institute, a national nonprofit health care organization, is dedicated to the prevention of sudden infant death and the promotion of infant health through an aggressive, comprehensive nationwide program.
The MISS Foundation is a 501 (c) 3, volunteer based organization committed to providing crisis support and long term aid to families after the death of a child from any cause.
ASIP (Association of SIDS and Infant Mortality Professionals)
The Association of SIDS and Infant Mortality Programs (ASIP) provides national leadership to establish and promote policy and practice for professionals who respond to infant and child death and is committed to bereavement support, risk reduction and prevention services.
The CJ Foundation for SIDS is a national
charitable organization dedicated to recognizing the special needs of the SIDS
community through funding SIDS research, support services and public awareness
programs.The Foundation hopes to increase public awareness of SIDS and to
contribute to a future in which no parent is faced with the tragedy of losing a
loved one to SIDS.
The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.
First Candle/SIDS Alliance is a national nonprofit health organization uniting parents, caregivers and researchers nationwide with government, business and community service groups to advance infant health and survival. With help from a national network of member and partner organizations, we are working to increase public participation and support in the fight against infant mortality.
National SIDS/Infant Death Resource Center
The
National Sudden and Unexpected Infant/Child Death Resource Center (
NCCC-SIDS (National Center for Cultural Competence)
The
The National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project IMPACT supports state and local infant and child death programs through sharing information, promoting policy and legislative changes, building upon resources, and fostering partnerships and communication.
Brain and Spinal Injuries
Brain Injury Association of America
The Brain Injury Association of America (BIAA) is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI). Together with its network of more than 40 chartered state affiliates, as well as hundreds of local chapters and support groups across the country, the BIAA provides information, education and support to assist the 3.17 million Americans currently living with traumatic brain injury and their families.
Brain Tumor Foundation for Children, Inc.
The mission of the Brain Tumor Foundation for Children is to provide financial assistance, social support, and information for families of children with brain and spinal cord tumors; fund research projects that improve treatment options and search for a cure; and raise public awareness of the disease and advocate on behalf of children who are affected.
Review of neurological
conditions and neurology related links.
Brain
and Spinal Injury Trust Fund Commission
The Brain and Spinal
Injury Trust Fund Commission enhances the lives of Georgians with traumatic
brain and spinal cord injuries by administering the central registry,
distributing resources through the trust fund, and advocating for improvements
in statewide services.
Brain Injury
Research Foundation
Where people affected by
brain injury find answers to questions, resources, and a caring community.
A resource on
preventing, treating, and living with traumatic brain injury. BrainLine.org is
a comprehensive website where people can find authoritative, useful, and timely
information and resources. BrainLine includes special sections for people with
TBI, their families and friends, and the professionals who work with them. With
new information featured each week, the site is designed to be a helpful place
where people can gather information, learn about new research, and find a
community of support and hope.
The Hydrocephalus Association
provides support, education and advocacy for people whose lives have been
touched by hydrocephalus and the professionals who work with them.
Malignant Brain Tumors and Neuro-oncology Resources
Neurological news, articles, abstracts, diseases, patient education and more.
National
Association of State Head Injury Administrators
Assisting state
government in promoting partnerships and building systems to meet the needs of
individuals with brain injury and their families.
National
Institute of Neurological Disorders and Stroke
A searchable site with information on selected neurological disorders.
Resource for understanding the legal system's involvement in brain and spinal
cord injury cases.
The North
American Brain Injury Society
NABIS is a society comprised of professional members involved in the care or
issues surrounding brain injury. The principal mission of the organization is
moving brain injury science into practice. Whether it is in the area of
clinical care, research, policy or litigation, the organization stands behind
the premise that advances in science and practices based on application of the
scientific evidence will ultimately provide the best outcomes for those with
brain injuries and the community as a whole.
The Virtual Hospital: The Human Brain
Online textbook with images of dissections of the real brain.
Searchable site with
images of various medical conditions and a neuro-imaging primer.
The National Library of Medicine
Provides health insurance (hospital and doctor’s services) to people ages 65 years and older, and some disabled people under 65 years of age (eligibility begins 2 years after date of injury). 800-669-8387 (Call to find your local office)
Social Security Administration
Provides cash benefits to
people who have worked and have become disabled. This entitlement program
ensures that citizens with disabilities receive benefits from this program. 800-772-1213 (Call to find the office in your
area)
Prescription Assistance
The Partnership for Prescription Assistance
You can determine which program you may be eligible for by answering questions and using the online wizard. You can also call 1-888-477-2669 to see if you qualify.
Home Modifications
National Resource Center on Supportive Housing and Home Modification
Includes an information-rich “Frequently Asked Questions” page and a state-by-state resource directory. Home modification refers to converting or adapting the environment in order to make performing tasks easier, reduce accidents, and support independent living.
The Center for Universal Design (CUD) is a national information, technical assistance, and research center that evaluates, develops, and promotes accessible and universal design in housing, commercial and public facilities, outdoor environments, and products. Our mission is to improve environments and products through design innovation, research, education and design assistance.
The home modification section of this user-friendly site features helpful product references.
Cancer
Provides medical information, referrals and treatment decision tools.
Association of Cancer Online Resources
Offers access to all types of resources that provide support, information and community to persons affected by cancer.
Candlelighters’ mission is to address the needs of families through programs that emphasize information, advocacy, awareness, and research. In this way, we can support families both directly and through our affiliation with local organizations, and work toward a better tomorrow for our children and adolescents. This site has fantastic web link resources.
Offers educational and support programs for families of children with cancer. They also help fund research for cancer.
Provides seaside retreats for families living through childhood cancer.
Provides current information about childhood cancers and a comprehensive resource directory.
Offers housing for families who have children in hospitals.
This website is designed to help educate siblings of children with cancer.
Creates uplifting portraits of children fighting cancer and other life-threatening diseases.
Curing Kids’ Cancer Inc. is a unique, national grassroots movement which aims to raise both awareness and money to find cures for all types of childhood cancer. Our programs fund the development of cutting edge therapies which will revolutionize childhood cancer treatment by replacing traditional chemotherapy. Our objective is to turn this killer disease into a curable one in our lifetime
Craniofacial Conditions
Children’s Craniofacial Association
Extremely informative website with a tremendous amount of resources and links.
The mission of the SHARE Network is to provide an alternative means for obtaining services and equipment for those with special healthcare needs, and do so without financial restriction. This includes respite, transportation, home help, personal care, adaptive equipment and/or any other service an individual may need.
Crohn’s Disease and Colitis
Crohns and Colitis Foundation of America
CCFA sponsors basic and clinical research of the highest quality. The foundation also offers a wide range of educational programs for patients and health-care professionals, and provides supportive services to help people cope with these chronic intestinal diseases.
National Digestive Diseases Information Clearinghouse (NDDIC)
The National Digestive Diseases Information Clearinghouse (NDDIC) is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services.
Reach Out For Youth (ROFY) provides a hand to hold, a shoulder to lean on, and the voices of experience from those who have raised children with Crohn's and related diseases and know how important support and education is for the child and the family.
United Ostomy Associations of America
UOAA is a national
network for bowel and urinary diversion support groups in the
Cystic Fibrosis
Provides public and professional education materials, fundraising events and support groups for patients and families. You can find a support chapter in your area at this site.
Down Syndrome
The Arc of the
National Down Syndrome Congress
The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.
The National Down Syndrome Society
The
National Down Syndrome Society is on a
Best Buddies is a nonprofit organization working to enhance the lives of
people with developmental disabilities by providing opportunities for
one-to-one friendships and integrated employment. There are over 500 chapters
in the
One of the most comprehensive sites I have been able to find on Down Syndrome. It has national and international links to every type of support group as well as dual diagnosis links.
Recommended Down Syndrome Sites on
the Internet
Compiled by Dr. Len Leshin, this site is a comprehensive resource of links for parents of children with Down Syndrome. Links include organizations, local and international sites, medical resources, family and individual home pages.
FAS is the leading cause of mental retardation in western civilization today! The Fetal Alcohol Syndrome Community Resource Center provides information and education about the consequences of drinking alcohol while pregnant and general information on alcohol related disabilities.
Epilepsy
International Bureau for Epilepsy
The International Bureau for Epilepsy provides assistance by offering international support, by creating means for worldwide exchange of information and, where possible, by setting standards which provide an international policy focus and identity for all persons with epilepsy. Much of this work is accomplished through the IBE working commissions, composed of volunteers who are experts in their subjects.
International League Against Epilepsy
The International League Against Epilepsy (ILAE) is the world’s preeminent association of physicians and other health professionals working towards a world where no persons' life is limited by Epilepsy. Its mission is to provide the highest quality of care and well-being for those afflicted with the condition and other related seizure disorders.
An excellent website with fantastic resource links that will help you with Ketogenic Diet plans for reducing epilepsy. For over eighty years it has been known and documented by many of this country’s finest medical institutions that after the failure of the first antiepileptic drug the ketogenic diet controls epilepsy in children with difficult to control seizures at a significantly higher rate than any drug or combination of drugs.
Citizens United for Research in Epilepsy (Cure)
Citizens United for Research in Epilepsy (CURE) is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.
The Epilepsy Foundation of America®
is the national voluntary agency solely dedicated to the welfare of the more
than 3 million people with epilepsy in the
The Epilepsy Genetic Association Database (epiGAD) is an online repository of data relating to genetic association studies in the field of epilepsy.
Hearing and Visual Impairment
This superb website provides information and resources about hearing loss. It is designed to assist parents in understanding their child's deafness and show them how to help their child succeed. The sponsor is the Deafness and Family Communication Center (DFCC) at Children's Hospital of Philadelphia (CHOP). DFCC provides clinical services for deaf and hard-of-hearing children and teenagers, and does research on how hearing loss affects children, teens and their families. The site is also translated into Spanish.
Alexander Graham ell
Association for the Deaf and Hard of Hearing
The Alexander Graham Bell Association for the Deaf and Hard of Hearing helps families, health care providers and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention.
American
Foundation for the Blind, National Literacy Center
AFB's priorities include broadening access to technology;
elevating the quality of information and tools for the professionals who serve
people with vision loss; and promoting independent and healthy living for
people with vision loss by providing them and their families with relevant and
timely resources. AFB's work in these areas is supported by the strong presence
the organization maintains in
Prevent Blindness America is the nation's leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. Focused on promoting a continuum of vision care, Prevent Blindness America touches the lives of millions of people each year.
National Federation of the Blind
The ultimate purpose of the National Federation of the Blind is the complete integration of the blind into society on a basis of equality. This objective involves the removal of legal, economic, and social discriminations; the education of the public to new concepts concerning blindness; and the achievement by all blind people of the right to exercise to the fullest their individual talents and capacities. It means the right of the blind to work along with their sighted neighbors in the professions, common callings, skilled trades, and regular occupations.
National Library Service for the Blind and
Physically Handicapped
Through a national network of cooperating libraries, NLS
administers a free library program of braille and audio materials circulated to
eligible borrowers in the
The National Association for Parents of
Children with Visual Impairments (NAPVI)
NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.
Heart and Lung
Educational materials on prevention, diagnosis and treatment of heart disease and stroke. Our mission is to build healthier lives, free of cardiovascular diseases and stroke. That single purpose drives all we do. The need for our work is beyond question. Additionally there are links that cover the entire spectrum of heart related illnesses.
National Heart, Lung and Blood
Institute
The National Heart, Lung, and Blood Institute (NHLBI) provides leadership for a national program in diseases of the heart, blood vessels, lung, and blood; blood resources; and sleep disorders.
The mission of the American
Lung Association is to save lives by improving lung health and preventing lung
disease.
HIV/AIDS
International HIV/AIDS Alliance
This website looks at health and nutrition issues which particularly affect children living with HIV/AIDS.
Special Issues for Children with HIV
This is an actual online Course you can take that focuses specifically on the special needs of children living with HIV
Handbook
on Paediatric AIDS in Africa
This handbook seeks to provide simple, accessible, and practical guidelines for health professionals involved in caring for children living with HIV & AIDS
Pediatric
HIV Infection and AIDS
This is a brief and clear UNAIDS document on a range of issues relating to children living with HIV/AIDS.
Pediatric
HIV Infection: Introduction (Eng)
This is a three part description of some of the main features of HIV infection in children from a medical perspective. In this first part these features are briefly introduced.
Pediatric
HIV Infection: Clinical Manifestations (Eng)
This document
explains that the severity of HIV in children is determined by two factors - symptoms
and age-adjusted CD4 count. It also describes the common opportunistic
infections which occur in children with HIV in the
Pediatric
HIV Infection: Diagnosis (Eng)
This document focuses on how HIV infection can be diagnosed in children, particularly those under eighteen months of age.
Nutrition
and HIV/AIDS: A Training Manual : Session 8: Nutrition and HIV Among Young Children
(Eng)
A PowerPoint presentation of part eight of a training manual on nutrition and HIV/AIDS. This session explains how important nutrition is among children with HIV. The presentation has additional information on the notes pages.
This handbook about children infected and those affected by HIV/AIDS is for carers of these children, community health workers, and also people living with HIV/AIDS who can use this as a source of information.
Comprehensive, up-to-date information on
HIV/AIDS treatment, prevention, and policy from the
Interstitial Cystitis
Kidney.org
for Interstitial Cystitis (IC)
Interstitial cystitis (IC) is a disorder in which the bladder (the organ that stores urine before it is passed out of the body) is overly sensitive, and usual causes for this, such as infection, cannot be found.
We are dedicated to educating and empowering individuals to make the best possible informed decisions about what protocols they can follow and what products they can use to improve their health and well-being.
Kidney Disorders
The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.
Donate Life
Lupus
The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus. You can join a Lupus Chapter in your state.
Medically Fragile Children
The Fragile Kids Foundation has assisted approximately 400 families per year with grants of equipment, by sharing items for rehabilitation and referring families to partner organizations working to meet a variety of challenges for medically fragile children.
Muscular Dystrophy
Facioscapulohumeral
Muscular Dystrophy
We are the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. The FSH Society harnesses the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected. We are a cause without borders.
Muscular
Dystrophy Family Foundation
The Muscular Dystrophy Family Foundation provides service to children and adults regardless of race or socioeconomic status.
International Myotonic Dystrophy
Association
The International Myotonic Dystrophy Organization promotes and advances the welfare, the care and the treatment of persons with Myotonic Muscular Dystrophy or Congenital Myotonic Dystrophy.
Muscular
Dystrophy Association
Provides an excellent resource page
that gives you
Parent
Project Muscular Dystrophy
A website focused entirely on Duchenne muscular dystrophy. Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
Myasthenia Gravis
Myasthenia Gravis Foundation of America
The Myasthenia Gravis Foundation of
America (MGFA) is the only national volunteer health agency dedicated solely to
the fight against myasthenia gravis. MGFA has over 30 Chapters around the
Prader-Willi Syndrome
Prader-Willi Syndrome Association
Provides significant information on PWS as well as resources for assistance.
Spina Bifida
Spina Bifida Association of America
The
Children and
Adults with Spina Bifida and Hydrocephalus
The Children and Adults with Spina Bifida website has been around since 1996. It is associated with SB-List, the first Internet Discussion list for parents of children with spina bifida. In particular, the focus of this site and SB-List is myelomeningocele, the most severe form of spina bifida.
Tourette Syndrome
National Tourette Syndrome Association
TSA has grown into a major national health-related organization with 31 U. S. Chapters with 125 support groups.
Tuberous Sclerosis
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected. This site contains numerous links to wonderful information that relates to Tuberous Sclerosis.
Turner Syndrome
Turner
Syndrome Society of the USA
Provides support and resources for
families and individuals living with Turner Syndrome.
