| 1. | EA/TEF Family Support Connection | | | Formed by and for families of children born with EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) and the medical professionals who treat them.
www.eatef.org |
| 2. | The Vater Connection | | | Support organization created by parents of children diagnosed with VATER Association
www.vaterconnection.org |
| 3. | TOFS - Tracheo-Oesophageal Fistula Support Group | | | TOFS is a national registered charity in the UK which supports families and carers of babies born with Tracheo-Oesophageal Fistula, Oesophageal Atresia, VATER (VACTERL) Syndrome or any form of oesophageal defect or damage.
www.tofs.org.uk |
| 4. | Limb Anomalies | | | Missing arm(s) or leg(s), Poland anomaly, Proximal Femoral Focal Deficiency, Holt Oram Syndrome, ectrodactyly, Proteus Syndrome, Sturge Weber Syndrome, Epidermolysis Bullosa, Nail Patella Syndrome, VATER Association, Arthrogryposis (amyoplasia), Cornelia de Lange Syndrome, other
www.kumc.edu |
| 5. | VACTERLS Association Family Network | | | Organization connecting VACTERLS/VATER families to create a network of those who have survived and can help others make it through.
www.homestead.com |
| 8. | A Problem Shared | | | The TOFS Support Group was founded in 1982 in response to the needs of children born with Tracheo-Oesophageal Fistula and associated conditions.
www.vetdesign.ndirect.co.uk |
| 9. | Center for Rare Disorders | | | The Rare Disorders Centre (RD Centre) at The National Hospital in Oslo is a project under the Government Action Plan for the Handicapped.(also in Norwegian)
www.rh.uio.no |
| 10. | ORPHANET | | | French medical database about rare disorders. (Rares maladies genetiques medicaments orphelins)
orphanet.infobiogen.fr |
| 11. | Atresia Treatment | | | A wide range of Atresia information concerning treatment, prevention, diagnosis, email groups, support groups, personal stories, and much more. Updated regularly.
www.healthlinkusa.com |
| 12. | Frequently Asked Questions (FAQ) | | | Surgeons, Nurses and Parents questions regarding The Malone Procedure, VATER, Soave pull-through for Hirschsprung's and more.
www.lij.edu |
| 14. | Radial Challenged Hands | | | Article by William P. Cooney, M.D. Division of Hand Surgery, Mayo Clinic
www.vaterconnection.org |
| 16. | Cloacal Exstrophy | | | Letter from researcher pointing to a link between a specific failure of a bone in the pelvis to develop as a cause of at least some cases of cloacal extrophy.
www.vaterconnection.org |
| 17. | Nail Patella Syndrome | | | A wide range of Nail Patella Syndrome information concerning treatment, prevention, diagnosis, email groups, support groups, personal stories, and much more. Updated regularly.
www.healthlinkusa.com |
| 20. | The Gateway Kiosk: Open Topic Forum | | | A Message Board for communicating questions, concerns and dialogue on children's genetic diseases. Includes a parent-match topic.
mcrcr2.med.nyu.edu |
| 21. | Vater Connection Bulletin Board | | | Bulletin board connecting people who have any connection with Vater Association with others and share experiences.
vaterconnection.org |
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