Transportation Security Administrationocial
(Information for travellers with disabilities and medical conditions)
www.tsa.gov/public/display?theme=156 
Patient Advocate Center- www.patientadvocate.org (help with many issues)

Clinical Trials Resources
Clinical Trials searchable database
Clinical Trials, by the National Institutes of Health, www.clinicaltrials.gov 

Disease / Condition Specific Organizations and Family pages 
22q11 deletion syndrome, www.cbil.upenn.edu/VCFS/22qandyou/
Aarskog Syndrome, http://healthcontent.westernbaptist.com/adamcontent/ency/article/001654.asp
American Cancer Society, www.cancer.org
American Liver Foundation, www.liverfoundation.org
American Pseduo-Obstruction & Hirschsprung's Disease Society, http://www.tiac.net/users/aphs/
American Society of Clinical Oncology, www.asco.org
Angelman Syndrome, http://www.angelinfo.org/  or www.angelman.org
Autism, Big Sky - Autism Spectrum Advocacy and Intervention in Texas www.bigskyfarm.4t.com
Autism, www.canfoundation.org
Attention Deficit Disorder, over 100 articles written by national ADHD authorities as well as adults with ADHD.  Plenty of information for parents too. 100 plus links to ADHD-related websites.   Includes the National ADHD Directory with over 1000 ADHD Service Providers listed as well as a National ADHD Events Calendar.  Free monthly eNews available. Additional benefits with $45 annual membership.
Birthmarks, www.birthmarks.org
Brain Injury Group-Hope through Treatment, www.brightonline.org 
Cancer Care, www.cancercare.org
Celiac Disease Foundation, www.celiac.org
Celiac Sprue Association/USA, Inc., www.csaceliacs.org/
Cerebral Palsy Parent Home Page, www.cpparent.org
Charge Syndrome, http://www.chargesyndrome.org/
Chromosome Deletion Outreach, www.chromodisorder.org 
Chromosome Disorder Support Group (rare): www.rarechromo.org
Connexin-deafness, www.crg.es/deafness
Cornelia de Lange Syndrome, http://www.cdlsusa.org/sitemap.html
Costello Syndrome, www.costellokids.co/uk/welcome.htm
Crohn's and Colitis Foundation of America, www.ccfa.org
Cyclic Vomiting Syndrome Association, www.cvsaonline.org 
Dysautonomia Foundation, Inc., www.familialdysautonomia.org
DiGeorge Syndrome, www.caringbridge.com/de/harleysdigeorgepage
EA/TEF Children & Family Support Connection, www.eatef.org
Familial Dysautonomia Hope, www.fdvillage.org 
Gastroparesis, www.gpda.net
Gastroparesis Patient Association for Cures & Treatments, www.g-pact.org
Gluten Intolerance Group, www.gluten.net 
Hallorvorden-Spatz syndrome/ PANK 2 NBIA Disorders, www.hssa.org
Hepatitis Foundation International, www.hepfi.org/
Hypoparathyroidism, http://www.endotext.org/endotextsearch/search.cgi?zoom_query=hypoparathyroidism&zoom_per_page=10&zoom_cat=-1&zoom_and=0&zoom_sort=0

International Foundation for Functional GI Disorders, www.iffgd.org
Irritable Bowel Disease Page, www.panix.com/~ibs/
Intestinal Pseudo-Obstruction, www.ki.se/medhs/gastro/psob/main.html 
Kidney MD, see American Healthcare Foundation, links@americanhealthcarefoundation.org 
Lance Armstrong Foundation for Cancer Patients, Caregivers and Survivors
          (includes links to nutrition info under "Suvivorship/Resources") www.laf.org 
Lissencephaly Network, Inc. www.lissencephaly.org
Smith-Magenis Syndrome, www.smithmagenis.org
Sotos Syndrome, www.well.com/user/sssa/
West Syndrome/Infantile Spasms, www.wssg.org.uk
Williams Syndrome, www.wsf.org

List of Rare Diseases, www.rarediseases.info.nih.gov/ord/diseases.html

National Disease Centered Organizations dir.yahoo.com/health/diseases_and_conditions/organizations

National Organization for Rare Disorders (NORD), www.rarediseases.org/
Obesity, http://www.hormone.org/learn/obesity.html
Office of Rare Disorders, www.rarediseases.info.nih.gov/ord/
Organic Acidemia Association, www.oaanews.org
Orthopedic's of all kinds- listing site, http://owl.orthogate.org/orthpat.html
Paget Foundation, http://www.paget.org/
Prader Willi, www.pwsausa.org
Pediatric/Adolescent Gastroesophageal Reflux Association, www.reflux.org
Pediatric Crohn's & Colitis Association, pcca.hypermart.net
People Living with Cancer, www.plwc.org
Propionic Acidemia Foundation, www.pafoundation.com/pages/869028/index.htm
Rett Syndrome, www.rsrf.org
SAFE, Inc. (supporting Autism & Families), www.autismsafe.org
The Guardian Society (motility disorders), www.guardiansociety.com
The National Adrenal Diseases Foundation, http://www.medhelp.org/nadf/
The National Eosinophilic Enteritis Disease Foundation, c4isr.com/NEED
The Vater Connection, www.vaterconnection.org
Thyroid List, Women's and Children's Center, http://www.cw.bc.ca/endodiab/endolink.asp#thyroid
Transplant Living, www.transplantliving.org
United Mitochondrial Disease Foundation, www.umdf.org
United Network for Organ Sharing, www.unos.org
United Ostomy, www.uoa.org 
Williams Syndrome, http://www.williams-syndrome.org/

Resources for Parents

Bandaides and Blackboards, funrsc.fairfield.edu/~jfleitas/contents.html
Canyon Ranch (Resort for chronically ill youth late teens, early 20's) www.dreamsteetfoundation.org
Children's Medical Organizer, www.childrenshc.org/cmo/
Double H Hole-in-the-Woods Ranch (summer camp that accepts kids on HPEN) www.doublehranch.org
Exceptional Parent Magazine, www.exceptionalparent.com
Family Voices, www.familyvoices.org
Florida Institute for Child Health Care Policy, www.ichp.edu
Health Care Transitions, hctransitions.ichp.edu
Make-A-Wish Fundation (Grants wishes for chronically ill children), www.wish.org
Mothers United for Moral Support, www.netnet.net/mums/
National Information Center for Children and Youth, www.nichcy.org
New Visions (workshops on oral feeding skills), www.new-vis.com
Parent Educational Advocacy Training Center, www.peatc.org
SNAP Online, www.snapinfo.org
Support for Adult Sibling/Child Siblings of People with Special Needs, www.thearc.org/siblingsupport
The Painted Turtle (offers summer camp experience for kids with IBD) www.thepaintedturtle.org/turtle
Public Medicine, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed 
Support for Adult Sibling/Child Siblings of People with Special Needs, The Painted Turtle (offers summer camp experience for kids with IBD) Public Medicine   

Caregiver Resources
AARP's Caregiving Webplace, www.aarp.org/indexes/health.html#caregiving
Caregiving Online (charges fees for some services) www.caregiving.com/index.html
Tips for Caregivers www.caregiving.com/support/html/freetips.htm
Ways to Help A Caregiver www.caregiving.com/support/html/helpcare.htm
Caregiver Network, www.caregiver.on.ca/
Caring from a Distance (for long distance caregivers), www.cfad.org
Well Spouse Foundation, www.wellspouse.org/information.html 

School-Based Health Centers
National Assembly on School-Based Health Care, www.nasbhc.org
Bureau of Primary Health Care's Healthy Schools, Healthy Communities, www.bphc.hrsa.gov/HSHC
National Association of Community Health Centers, www.nachc.com

School Health - General
American School Health Association, www.ashaweb.org
Centers for Disease Control, www.cdc.gov/nccdphp/dash
National Association of School Nurses, www.nasn.org
National Association of State Boards of Education, www.nasbe.org/heathyschools/index.htm
National School Board Association, www.nsba.org/schoolhealth

Back to School
Back to School: Resources, http://www.starbright.org/projects/vwa/bts_resources.html

School Mental Health
American Academy of Child and Adolescent Psychiatry, www.aacap.org
American Hospice Foundation, www.americanhospice.org
Center for School Mental Health Assistance, csmha.umaryland.edu
National Association of Psychologists, www.naspweb.org
Research & Training Center on Family Support and Children's Mental Health, www.rtc.pdx.edu/index.htm
School Mental Health Project, smhp.psych.ucla.edu

Child & Adolescent Health - General
Academy for Educational Development, www.aed.org/youth.html
American Academy of Pediatrics, www.aap.org
American Medical Association's Adolescent Health On-Line, www.ama-assn.org/adolhlth
Institute of Medicine/National Research Council, www4.nationalacademies.org/cbsse/bocyfweb.nsf
National Adolescent Health Information Center, youth.ucsf.edu/nahic
National Center for Education in Maternal and Child Health, www.ncemch.org
National Center for Youth with Disabilities, www.peds.umn.edu/Centers/ihd/ncyd.html
Society for Adolescent Medicine, www.adolescenthealth.org
Urban Institute, http://www.urban.org
Child & Adolescent Health – Data
Child Trends, Inc., www.childtrends.org
DHHS-Youth Information, www.youth.os.dhhs.gov
Federal Interagency Council on Statistical Policy, www.fedstats.gov
Federal Interagency Forum on Child and Family Statistics, www.childstats.gov
Kids Count, www.aecf.org/kidscount
Trends in the Well-Being of America's Youth & Children, aspe.os.dhhs.gov/hsp/97trends/intro-Web.htm
Youth Indicators, www.nces.ed.gov/pubs/yi 

Children & Adolescent Health - Policy
Children's Defense Fund, www.childrensdefense.org
Children's Partnership, www.childrenspartnership.org
National Academy of State Health Policy, www.nashp.org
National Conference of State legislators, www.ncsl.org
Public Policy Analysis and Edu. Cntr. for Middle Childhood and Adolescent Health, youth.ucsf.edu/policycenter
Southern Institute on Children & Families, www.kidsouth.org
Children & Adolescent Health - Family & Community Input Community Toolbox, ctb.lsi.ukans.edu
Family Support America, www.familysupportamerica.org
Families USA, www.familiesusa.org
HealthCareCoach.com, www.healthcarecoach.com

Health Policy – General
Academy Health, www.academyhealth.org
Center for Health Care Strategies, www.chcs.org
Center for Health Policy Research, www.gwhealthpolicy.org
Center for Studying Health System Change, www.hschange.com
National Committee for Quality Assurance, www.ncqa.org
National Health Policy Forum, www.nhpf.org
Robert Wood Johnson Foundation, www.rwjf.org  

Russell-Silver Syndrome Additional Resources
http://health.groups.yahoo.com/group/RSS-Support/
This list is a support/discussion list for anyone who has a child or family member affected by RSS or for adults with RSS.  Discussions include experiences, concerns, ideas, information, and much more.

 http://groups.yahoo.com/group/RSS-People/ 
This list is a support/discussion list for RSS Adults only. It provides the opportunity for adults to discuss their experiences and provide support and advice. 

 http://health.groups.yahoo.com/group/rssaustralia/
This list is a support/discussion list for Australian families and adults affected by RSS.  Discussions include experiences, concerns, ideas, information, and much more.

http://www.russell-silversupport.com/ 
This website is devoted to answering your questions and giving you the support you need to make wise medical decisions, along with a network of people whose giving hearts will lend you advice and calm your fears about RSS and SGA. It provides the opportunity for adults to discuss their experiences and provide support and advice. Discussions include experiences, concerns, ideas, information, and much more.