When surfing the web for medical information
Generally the best place to start
this is the best starting place for almost any disorder that may lead to a disability. The site is made to provide the broad array of information needed to find services, products, social connections, camps, and much more for persons with disabilities. In the library you can find many many disorders with links to the offical or some of the best websites both to give information or support for that particular disorder - every disorder from Angleman's to Zellweger's is in this library.
Autism
www.autism-society.org
This is a wonderful site and the place where everyone with questions about Autism, PDD, Asperger's Syndrome should start!
http://www.tonyattwood.com.au
Tony Attwood is a very well known and well respected Asperger's Syndrome specialist who is also very easy to read. He has authored a wonderful book that I have recommended for years.
Some recommended sites for Specific Disorders
www.nodcc.org
The National Organization for Disorders of the Corpus Callosum
www.rarediseases.org
National Organization for Rare Disorders
www.umdf.org
United Mitochrondrial Disease Foundation
www.tsalliance.org
The Tuberous Sclerosis Alliance
www.ucp-oc.org/UCP
United Cerebral Palsy of Orange County
www.abilitiesexpo.com
the abilities expo is a convention event that occurs in a number of locations throught the country where people, organizations, devices, and even vechiles to improve the quality of life for those with physical disabilities come together. I found so many great resources here 2009 Anaheim. Also - look for a wonderful article aboult a random act of kindness that allowed a 5yo boy to walk independently for the first time while at the expo!!!♠
www.signaturegenomics.com
Industry site that outlines testing for specific genetic disorders.
http://www.familyconnect.org/parentsite.asp
Great resources for the visually impaired and their families
Epilepsy and Seizure related links
www.epilepsyfoundation.org/local/norcal/parents-resource-guide.cfm
Parent Resource Guide for Seizure disorders and Epilepsy
Epilepsy Foundation of Northern California has a wonderful tool that is free and downloadable in PDF format. This guide is great for parents and professionals. This guide teaches about epilepsy and seizures, appropriate first aide for seizures, services that are available to families with an epileptic, how to get services, a seizure description tool, forms to use when going to the doctor or writing down medication effects. I can not recommend this too highly. I also suggest that this be brought to the school or work - if not the whole file than at least the seizure description tool which is done with pictures and with words that are available in English, Spanish, and Vietnamese.
www.epilepsy.com
A very complete website that is monitored by internationally respected epileptologists. This site is so full of information, including videos and podcasts, that you could spend days here. Careful as the majority of the information is about adults. If you or the person in your life with epilepsy is an infant, child, teen or is elderly, then it is best to look for the part of the site that is specifically about that age group.
www.akfus.org
This organization was set up to give information about epilepsy and to bring awareness about epilepsy to the public. The Anita Kaufman Foundation is run by the ever energitic and very generous Debbie Jones, the best friend of the now pasted Anita Kaufman. My hats off to Debbie and I salute Anita for their efforts to erase the stigma that is associated with epilepsy and seizures. If you check out this web site you will find an array of information and products that are given away
www.epilepsyfoundation.org
Epilepsy Foundation of America
www.epilepsy-socalif.org
Epilepsy Foundation of Greater Los Angeles County
www.purpleday.org
For the promotion of an international day of epilepsy awareness
www.seizuretracker.com
ree tool to keep track of seizures on line
www.seizuresupport.com
Site by a parent of a child with epilepsy, this parent designed and sells a Safety Place Mat that has allowed children with a number of problems, including the tendency to suddenly fall and hit head on table, to sit at the table without fear of injury and without spills going all over the kitchen.
www.epilepsyclassroom.com
Class room resources for Parents and Teachers through Epilepsy Foundation
www.vnstherapy.com
this is the site designed by the Cyberonics outlining there product: the Vagal Nerve Stimulator. I always recommend that anyone looking to education themselves on a product look at both an independent site that is reviewed and updated by professionals in their field and the site that is built to promote the product.
www.epgp.org
The Epilepsy Phenome Genome Project (EPGP) Why do my children have epilepsy? Why don’t seizure medications work for some people? Why do my sibling and I both have epilepsy?
Medical Identification Links
www.laurenshope.com
A Medical ID bracelet that combines safety with style
www.medicalert.org/amb
standard in the industry
www.medicharms.com
medical alert ID that is child friendly or as watch or as shoe tag for people who would rather not wear the ID.