Support Groups
About Face |
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| Rickie Gill Executive Director | ||
| PO Box 969 | ||
| Batavia, IL 60510-0969 | ||
| 888486-1209 | ||
| aboutfaceusa@comcast.net | ||
| www.aboutfaceusa.org | ||
Angioma Alliance |
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| Quaker Meeting House Road | ||
| Williamsburg, VA 23188 | ||
| www.angiomaalliance.org | ||
Anomalie Vasculaire: |
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| http://www.anomalievasculaire.org/ | Founded in Quebec by Lisa Doust this organization partners with NOVA and other US based groups to bring support and information in French. | |
Cleft Advocate |
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| Debbie Oliver Program Coordinator | A program of About Face USA | |
| 702-769-9264 | Includes Pathfinder Counselors to help bridge the gap between the medical community and families | |
| debbie@cleftadvocate.org | ||
| www.cleftadvocate.org/ | ||
The Cleft Palate Foundation |
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| 104 Estes Ddrive Suite 204 | ||
| Chapel Hill, NC 27514 | ||
| 188-24 Cleft | ||
| cleftline@aol.com | ||
| www.cleftline.org | ||
Cloves Syndrome Foundation |
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http://clovessyndromefoundation.org/
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The CLOVES Syndrome Foundation is focused on improving the lives of CLOVES patients by funding Overgrowth and Vascular Anomaly research. Our foundation is committed to raising public awareness and providing member support by offering educational literature and resources while also establishing support networks within the medical and overgrowth communities”; | |
Cloves Syndrome Community |
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| PO Box 406 West Kennebunk, ME 04094 | ||
| 207-281-2130 | Cloves Syndrome Commuinty provdes support, information and hope to children, families and their loved ones. The CSC was developed with the understanding that when patients, and parents are empowered and connected with others facing similar challenges, they will be better equipped to support their child or their own medical, emotional and physical needs. | |
Faces-The National Craniofacial Association |
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| PO Box 11082 Chattanooga, TN 37401 | ||
| 1-800-332-2373 | ||
| www.faces-cranio.org | ||
| Stephanie Hale Program Director | ||
Healing the Children |
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| PO Box 420 Butler, NJ 07405 | ||
| 973-838-7114 | ||
| Fax 973-492-8299 | ||
| www.Htcmlantic.org | ||
| htcmid@verizon.net | ||
Hemangioma Treatment Foundation |
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| Dr. Marcelo Hochman Founder | ||
| 2097 Henry Tecklenburg Drive | ||
| Suite 212 West | ||
| Charelston, SC 29416 | ||
| 843-571-7194 | ||
| info@hemagniomatreatment.org | ||
| www.hemangiomatreatment.com | ||
KT Foundation |
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| Mark Metcalf- Executive Director | ||
| PO Box 205 | ||
| Lakeview, NC 28350 | ||
| 910-949-3054 | ||
| ktfoundation@earthlink.net | ||
| www.ktfoundation.org | ||
KT Support Group |
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| 4610 Woodale Ave | ||
| Edian, MN 55424 | ||
| 952-925-2596 Judey Vessey Contact | ||
| 623 975-6902 Kathy Temonto AZ state contact | ||
| www.k-t.org | ||
Love Without Borders |
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| www.jesus4you.com | ||
Lymphatic Research Foundation
|
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| 40 Garview Point Rd Glen Cove NY | ||
| www.lymphaticresearch.org | ||
Lymphangiomatosis & Gorham’s Disease Alliance (LGD Alliance) |
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| 19919 Villa Lante Place | ||
| Boca Raton, FL 33434 | ||
| Phone: (561) 441-9766 (8:30 a.m. – 5 p.m. EST, Monday – Friday) | ||
| Email: info@lgdalliance.org | ||
| www.lgdalliance.org | ||
NORD-National Organization of Rare Disease |
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| PO Box 8923 | ||
| New Fairfield, CT 06812-8923 | ||
| 203-746-6518 | ||
| www.raredisease.org | ||
Sturge Weber Foundation |
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| Karen Ball Executive Director | ||
| PO Box 418 | ||
| MT Freedom, NJ 07970 | ||
| http://www.sturge-weber.org/ | ||
Vascular Birthmark Foundation |
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| Linda R. Shannon, PhD Founder | ||
| www.birthmark.org | ||
| PO box 106 Lantham, NY 12110 | ||
Volunteer Center of Greensboro |
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| 336-373-1633 | ||
| info@volunteergso.org | ||
| Revised list 07-2011 | ||
