The Sturge Weber Foundation

Sturge-Weber Syndrome 

• Sturge-Weber (UK)
• The Norwegian Foundation for Sturge-Weber Syndrome (NFSW)
• Sturge-Weber Syndrome - Germany
• Sturge-Weber Syndrome - France
• Sturge-Weber Syndrome - Netherlands
• National Institute of Health
• eMedicine - Article about SWS

Klippel-Trenaunay Syndrome 

• KT Foundation
• Klippel-Trenaunay Syndrome Support Group
• Netherlands KT Foundation
• The Vein Directory - a resource for locating a vein specialist

Seizures & Neurological Issues

• Epilepsy Life Links - www.epilepsygroup.com  and www.epilepsylifelinks.com  
• Epilepsy Ontario - an excellent site for information on seizure classification.
• Cleveland Clinic Foundation - one of their goals is to educate the public, trainees, and practitioners about neurosurgical disorders and their management, the Cleveland Clinic Foundation provides a lot of helpful information.
• The Charlie Foundation - learn more about about the ketogenic diet as a treatment for childhood epilepsy
• Dana Alliance for Brain Initiatives - A year round resource for the latest news and information about the brain and brain research.
• The Epilepsy Foundation of America an organization dedicated to those who deal with epilepsy in their lives.
• Headache Pain
• The Hemispherectomy Foundation
• The Hemi-Kids Foundation - a non-profit corporation which supports families of children who have hemiplegia or hemiparesis due to pediatric stroke or other causes.
• Seizure Tracker:  a free comprehensive method of tracking seizure incidents and medication

Glaucoma & Vision Impairment

• International Glaucoma Association- glaucoma information.

• American Council for the Blind- a national not-for-profit advocacy organization for people who are blind or visually impaired.
• Lighthouse International- the world's leading resource on vision impairment. It operates and coordinates rehabilitation, education, research and advocacy.
• American Academy of Ophthalmology Web site Search "glaucoma" and find articles for teachers and parents.
• American Optometric Association
• Canadian Ophthalmological Society
• National Institutes of Health- comprehensive and well documented.
• Blind Children's Fund- responds to the special educational and emotional needs of blind children and their families.
• Pediatric Glaucoma and Cataract Family Association– a Canadian organization with information for parents
• The Glaucoma Research Foundation complete list of best medical centers for eye care.
• American Academy of Ophthalmology
• American Foundation for the Blind– search “glaucoma” and get articles on “What Teachers and Parents Need to Know” and a “Specific Assessment for Students with Low Vision” as well as other links.
• National Association for the Visually Handicapped- is the only nonprofit health agency in the world solely dedicated to providing assistance to those with partial vision. NAVH is committed to ensuring that impaired vision does not result in impaired life.
• Vision Service Plan - a plan many employers utilize. The Plan also donates free eye exams through Colin Powell's American's Promise.

Port Wine Birthmarks & Vascular Malformations

• American Academy of Dermatology - The American Academy of Dermatology is the largest of all dermatologic associations.
• Kids Skin Health - a website for families and kids from the American Academy of Dermatology
• National Institute of Arthritis and Musculoskeletal and Skin Diseases- The Institute conducts and supports basic research on the normal structure and function of joints, muscles, bones, and skin.
  Nevus Outreach- A Voluntary Health Organization dedicated to improving awareness and finding a cure for giant congenital nevi
• The Nevus Network- The Nevus Network is a support group for persons with giant congenital nevi and their families.
• Birthmarks.com- Providing support and referrals for children and adults born with vascular birthmarks
• AboutFace International- a voluntary health organization dedicated to providing individual and family support to those who have facial differences.
• Angioma Alliance- voluntary health organization created by people affected by cavernous angioma (cerebral cavernous malformations).
• Share A Smile Foundation- provides financial support to children requiring surgery and/or medical treatments to repair or remove vascular anomalies.
• Shriners Hospitals- a network of pediatric specialty hospitals, founded by the Shrine, where children under the age of 18 receive excellent medical care absolutely free of charge
• Hereditary Hemorrhagic Telangiectasia (HHT) Foundation- aid and support persons with Hereditary Hemorrhagic Telangiectasia (HHT) also known as Osler-Weber-Rendu Syndrome
• National Organization of Vascular Anomalies- dedicated to aiding individuals in the management and care of vascular anomalies.
• Let's Face It - an information & support network for people with facial differences.

Disability Resources

• The Arc of the United States(formerly Assoc. for Retarded Citizens of the United States) - The largest voluntary organization in the United States devoted solely to the welfare of disabled persons and their families.
• Exceptional Parent Magazine.- a magazine for parents of children with special needs.
• The National Information Center for Children and Youth with Disabilitiesis the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Their special focus is children and youth (birth to age 22).
• National Institute of Neurological Disorders and Stroke- The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.
• A New Magazine for Parents of Children with Special Needs - Dedicated to Parents of Children with Special Needs.
• Ableplay- A comprehensive evaluation of off-the-shelf toys for children with special needs.
• http://www.adaptivedesign.org/. A workshop that designs and helps provide adaptive equipment for children with disabilities.
• Federation for Children with Special Needs- a voluntary organization dedicated to providing information, support, and assistance to parents of children with disabilities, and professionals.
• Helen Keller National Center for Deaf-Blind Youth and Adults
• Learning Disabilities Association of America- devoted to the well-being and education of children and adults with learning disabilities and will respond to requests for information on any related topic.
• National Resource Center for Respite and Crisis Care Services- devoted to issues regarding the provision of respite to caregivers
• Social Security Disability & SSI Claims - information for people seeking to file for Social Security Disability and or SSI Disability.

Social Security & Disability Resource Center - more helpful information

LD Online- information on learning disabilities for parents, teachers, and other professionals

• National Association of Independant Schools- learn about the variety of independent school choices available to families, using this searchable database.
• National Library of Medicine- search for medical articles
• Schwab Foundation for Learning - A parents guide to helping kids with learning disabilities.
• Disability Secrets - For those who are having difficulty applying for SSDI, some suggestions from a private consultant.
• www.deaflinx.com  A list of resources for the deaf and hard of hearing community
• www.deaflink.com
• www.deafwebsites.com - A vast listing of links by subject (US) and by countrires for the deaf community
• www.wrightslaw.com: Information on all aspects of Special Education and Advocacy
• www.patientadvocate.org: Patient Advocate Foundation assists patients with access to financial and educational resources

Patient Assistance Programs

• Needy Meds- provides information about patient assistance programs which provide no cost prescription medications to eligible participants
• Benefits Checkup- Designed for people over age 55, this online tool can be used to connect to government programs that can help pay for prescription drugs, health care, utilities, and other needs. The site contains information on more than 1300 programs from all fifty states.
• Partnership for Prescription Assistance- a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.
• Pharmaceutical and Research Manufacturers of America- search for information and application forms for company and state programs by company name, drug name or state.
• Health Well Foundation- an independent, charitable organization that assists eligible individuals in obtaining prescription medications.
• Kaiser Family Foundation - How to challenge insurance denials.

Other Medical Links

• Miracle Flight for Kids- provides free access to health care for families who cannot afford transportation to treatment centers anywhere in America.
• Airlifelineis funded in part by Ronald McDonald's House of Charities. An organization of experienced pilots provide free transportation to needy adults and children.
• Air Care Alliance - a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service.
• Angelflightatnih.org provides air transportation for patients in financial need
• Mercymedical.org gives links to other air transportation sources
• Angel Flight Europe - arranges free long distance transportation in non-emergency medical situations. Serves the European Union and Switzerland.
• Natl. Assn of Hospital Hospitality Houses - network of local hospitality resources for parents and adults planning hospitalization. Listing are for every state in the US
• National Institutes of Health- Simply described, the goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.
• National Organization of Rare Diseases (NORD)- a clearing house for information and contacts on rare conditions.
• Internet Hospital Directory- full listing of hospitals world-wide
• Drug Digest- check interactions between drugs
• My Family Health Portrait - download software to catalog information that will save doctors valuable time.
• DrScore- A service for patients to provide comments on their physicians and rate the care they have received.
• Healing the Childrenhelps secure and provide medical treatment for needy children.
• American Academy of Developmental Medicine and Dentistry

This material is provided for your general information only. The Sturge-Weber Foundation does not give medical advice or engage in the practice of medicine. The SWF under no circumstances recommends treatment for specific individuals and in all cases recommend that you consult your physician or local treatment center before pursuing any course of treatment.