| About Face |
Provides information and support for individuals with |
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| Rickie Gill Executive Director |
a facial disfigurement and to their families |
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| PO Box 969 |
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| Batavia, IL 60510-0969 |
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| 888486-1209 |
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| aboutfaceusa@comcast.net |
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| www.aboutfaceusa.org |
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| Angioma Alliance |
Provides information and assistance to those affected by cavernous angioma of the brain and spine. They are dedicated to improving the lives of those affected by this |
| Quaker Meeting House Road |
type of vascular anomaly. |
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| Williamsburg, VA 23188 |
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| www.angiomaalliance.org |
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| Anomalie Vasculaire: |
French Website dedicated to assisting French Speaking patients and contacts |
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| http://www.anomalievasculaire.org/ |
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| Cleft Advocate |
A program of About Face USA |
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| Debbie Oliver Program Coordinator |
Includes Pathfinder Counselors to help bridge the gap between the medical community and families |
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| 702-769-9264 |
ONE-ONE Peer Couselors |
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| debbie@cleftadvocate.org |
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| www.cleftadvocate.org/ |
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| The Cleft Patate Foundation |
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| 104 Estes Ddrive Suite 204 |
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| Chapel Hill, NC 27514 |
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| 188-24 Cleft |
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| cleftline@aol.com |
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| www.cleftline.org |
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| Faces-The National Craniofacial Association |
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| PO Box 11082 |
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| Chattanooga, TN 37401 |
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| 1-800-332-2373 |
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| www.faces-cranio.org |
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| Stephanie Hale Program Director |
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| Healing the Children |
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| PO Box 420 Butler, NJ 07405 |
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| 973-838-7114 |
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| Fax 973-492-8299 |
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| http://users.nac.net/htcmid/ |
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| htcmid@verizon.net |
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| Hemangioma Treatment Foundation |
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| Dr. Marcelo Hochman Founder |
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| 2097 Henry Tecklenburg Drive |
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| Suite 212 West |
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| Charelston, SC 29416 |
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| 843-571-7194 |
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| info@hemagniomatreatment.org |
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| www.hemangiomatreatment.org |
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| KT Foundation |
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| Mark Metcalf- Executive Director |
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| PO Box 205 |
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| Lakeview, NC 28350 |
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| 910-949-3054 |
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| ktfoundation@earthlink.net |
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| www.ktfoundation.com |
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| KT Support Group |
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| 4610 Woodale Ave |
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| Edian, MN 55424 |
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| 952-925-2596 Judey Vessey Contact |
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| 623 975-6902 Kathy Temonto AZ state contact |
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| www.k-t.org |
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| Let’s Face It - now run through the U of Michigan |
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| Univeristy of Michigan |
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| School of Dentistry |
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| 1011N Univeristy |
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| Ann Arbor, MI 48109-1078 |
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| 360-676-7325 |
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| http://desica.dent.umich.edu/faceit/ |
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| Email: faceit@umich.edu |
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| Love Without Borders |
Love Without Borders Ministries, Inc. is a non-profit organization, whose purpose is to evangelize the world and transcend all denominational barriers with the Word of God. |
| www.jesus4you.com |
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| Lymphangiomatosis & Gorham’s Disease Alliance |
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| (LGD Alliance) |
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| 19919 Villa Lante Place |
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| Boca Raton, FL 33434 |
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| Phone: (561) 441-9766 (8:30 a.m. - 5 p.m. EST, Monday - Friday) |
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| Email: info@lgdalliance.org |
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| Web Site: |
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| www.lgdalliance.org |
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| NORD-National Organization of Rare Disease |
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| PO Box 8923 |
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| New Fairfield, CT 06812-8923 |
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| 203-746-6518 |
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| www.raredisease.org |
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| Ollier Maffucci Support |
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| Ollier disease and Maffucci syndrome |
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| Parent to Parent USA |
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| http://www.p2pusa.org/ |
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| Proteus SyndromeFoundation |
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| http://www.proteus-syndrome.org/ |
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| Sturge Weber Foundation |
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| Karen Ball Executive Director |
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| PO Box 418 |
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| MT Freedom, NJ 07970 |
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| www.sturge-weber.com |
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| Volunteer Center of Greensboro |
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| 1500 Yanceywille Street |
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| Greensboro, NC 27405 |
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| info@volunteergso.org |
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| 336-373-1633 |
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| SNAP:Special Needs Advocacy For Parents |
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| 888-310-9889 |
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| www.snapinfo.org |
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| International Support |
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| NOVA Around the World |
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| Australia |
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| Canada |
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| Argentina |
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| UK |
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| Message Forums Blogs |
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| NOVA Facebook |
http://www.facebook.com/pages/National-Organization-of-Vascular-Anomalies-NOVA/98394768856?v=info&viewas=628612441 |
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| PHACE Support |
http://phacesyndromecommunity.activeboard.com/index.spark |
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| Vascular Birthmark Support |
http://www.msnvb.org/ |
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| Reference Web sites |
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| http://www.emedicine.com/ Online reference for medical conditions |
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| www.24dr.com/reference/encyclopaedia/strawberry.htm Information about specific medical conditions & symptoms |
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| http://medlineplus.gov/ A service of the US National LIbrary of Medicine,Encylopedia,Dictionary, Health Topics and more |
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| http://www.nlm.nih.gov/ A NLM Medical Library resource |
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| http://www.webmd.com/medical_information/condition_centers/default.htm A-Z Information on Health Topics |
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| http://www.dermweb.com/dermatology_resources/external.htm#Patient Non-profit, non-commerical informational resource for Dermatology related issues. |
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| Transportation Services |
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| American Airlines |
Angel Flight America |
Continental CAREFORCE |
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| Miles for Kids in Need |
1800-446-1231 Request Free Flights |
2825 E Pebble Beach |
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| PO Box 61916 |
1800-877621-7177 Donate or Volunteer to pilot flights |
Missour City, TX 77459 |
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| Worth Ariport |
www.angelflightamerica.org |
281-261-6626 |
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| Dallas Fort Worth, TX 76281 |
* 2003 Airlifeline and Angel Flight America merged |
rjack@springmail.com |
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| 817-963-8118 |
|
Bob Jack Contact Corrdinator |
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| Fax 817-931-6890 |
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| Marie.Ising@aa.com |
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| LifeNet South Carolina formerly CareForce |
Miracle Flights |
National Patient Travel |
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| 1-800-327-2611 Emergency Transport |
www.miracleflights.com |
http://www.patienttravel.org/ |
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|
Mercy Medical Airlift |
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| 1-800-256-5886 Non Emergency Transport |
1888-675-1450 |
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| http://www.lifenetsc.net/index.html |
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| Delta Air Sky Wish |
Northwest Airlines-Kids Care Program |
TWA Operation Life Off |
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| 1-800-675-1405 or 757-318-9175 Steve Smelser |
1612-726-4206 |
www.operationliftoff.com |
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|
http://www.nwa.com/corpinfo/aircares |
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click on Kid Cares |
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| Cosmetics |
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| Cover Blend by Exuviance:Neostrata Company |
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| 4 Researchway |
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| Princeton, NJ 08540 |
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| www.neostrata.com/coverblend |
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| Books and Reference Materials |
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| Babyface: A story of Heart and Bones |
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| www.woodbinehouse.com |
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| www.barnesandnoble.com |
A mother’s inspiring memoir chronicles of the life of her son Nathaniel, born with Apert syndrome. Features Sugery by Dr. John Mulliken of Boston. |
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NOVA Executive Director Karla Hall previewed this book for publishers and reccomends it for any parent for a child with special medical needs. |
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| Cosmetic Laser Surgery by Tina Alster, MD |
A patient guide to cosmetic laser surgery |
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| Available from Hemangioma Newsline |
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| www.barnesandnoble.com |
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| www.amazon.com |
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| Funny Face by Debbie Breslow |
The touching story of her son, Kenny and life with an AVM. Debbie is an author and advocate for facial deformity issues. |
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| djbreslow.com |
NOVA Recommends this book. |
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| l |
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| Hemangiomas and Vascular Malformations of the Head and Neck: edited by Milton Waner |
Excellent Medical Text |
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| www.amazon.com |
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| www.barnesandnoble.com |
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| Sturge Weber Syndrome edited by Karen Ball |
The Resource Guide for a season and a lifetime. |
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| SWF@sturge-weber.com |
NOVA recommends this book for all SWF patients and their families. |
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| Marked for Life by Joie Davidow, A story of Discovery and Redemption |
“A memoir about growing up with a purple-red birthmark that covered nearly half my face” This touching account of her own life reveals many of the secrets and heartache for those with facial PWS. Ms. Davidow is the Founder and Editor of LA Style Magazine and the LA Weekly. |
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| www.joiedavidow.com |
NOVA recommends this book for those affected by facial disfigurment and facial PWS |
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| Gianna’s Wild Strawberry |
Authored by Dana Guerrra, mother of a child with hemagnioma. Dana wrote the book to give hope for families of chidlren with hemangioma |
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| http://www.enter.net/~happymail/ |
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| Every Crooked Pot: A Novel by Renee Rosen |
The story of a girl with a “strawberry” birhtmark around her eye. Terminology in the book varies from hemagnioma to PWS. Excellent book for pre-teens and young teens. |
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| NOVA Executive Director Karla Hall previewed this book for publishers and highly recommends it. |
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| Beauty in Balance by Dr. Allen Rosen & Dr. Valerie Ablaza |
A common sense approach to plastic surgery and treatments. |
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| Reference Web sites |
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| http://www.emedicine.com/ Online reference for medical conditions |
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| www.24dr.com/reference/encyclopaedia/strawberry.htm Information about specific medical conditions & symptoms |
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| http://medlineplus.gov/ A service of the US National LIbrary of Medicine,Encylopedia,Dictionary, Health Topics and more |
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| http://www.nlm.nih.gov/ A NLM Medical Library resource |
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| http://www.webmd.com/medical_information/condition_centers/default.htm A-Z Information on Health Topics |
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| http://www.dermweb.com/dermatology_resources/external.htm#Patient Non-profit, non-commerical informational resource for Dermatology related issues. |
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