About Face

Rickie Gill Executive Director
PO Box 969
Batavia, IL 60510-0969
888486-1209

aboutfaceusa@comcast.net
www.aboutfaceusa.org

Provides information and support for individuals with a facial disfigurement and to their families.

Angioma Alliance

Quaker Meeting House Road

Williamsburg, VA  23188

www.angiomaalliance.org

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

type of vascular anomaly.

Anomalie Vasculaire:  French Web site

http://www.anomalievasculaire.org/

The first French Website dedicated to assisting French Speaking patients and contacts.

A program of About Face USA

Includes Pathfinder Counselors to help bridge the gap between the medical community and families

ONE-ONE Peer Couselors

Provides sercices for individuals and families affected by clefts and other craniofacial birth defects

Cleft Palate Foundation was awarded one of America's Best Independtent Charities.

Diagnosis Knowsis

http://diagknowsis.org/about.htm

Empowering patients with the tools they need to make tough

medical decisions.  A patient education and advocacy organization

Every Patients Advocate

http://trishatorrey.com/

Exceptional Parent Magazine

55 Main Street

Johnstown, PA  15901

www.eparent.com

A magazine and resource to parents with special needs children

The web stie is for parents and professionals of children with exceptional needs.

Faces-The National Craniofacial Association

PO Box 11082

Chattanooga, TN  37401

1-800-332-2373

www.faces-cranio.org

Stephanie Hale Program Director

A non-profit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease.

Services include 3 areas:

Client Travel

Public Awareness and Understanding

Information and Support

Healing the Children
PO Box 420 Butler, NJ
07405
973-838-7114
Fax 973-492-8299

http://users.nac.net/htcmid/
htcmid@verizon.net

Secure and make available free medical treatment for needy children.  There is a national office and chapters in the USA.

HHT Foundation International
PO Box 8087
New Haven CT06530
Sundrome.
www.hht.org

Hemangioma Treatment Foundation

Jane Milner Executive Director

Dr. Marcelo Hochman Founder

2097 Henry Tecklenburg Drive

Suite 212 West

Charelston, SC  29416

843-571-7194

info@hemagniomatreatment.org

www.hemangiomatreatment.org

www.hemangiomatreatment.com

The Hemangioma Treatment Foundation was founded by Dr. Marcelo Hochman in order that he could better help children with vascular anomalies.  The Foundation is funded by private donations and pays for surgeries for those in need related to vascular anomalies.

KT Foundation

Mark Metcalf- Executive Director
PO Box 205
Lakeview, NC 28350
910-949-3054
ktfoundation@earthlink.net
www.ktfoundation.com

KT Support Group
4610 Woodale Ave
Edian, MN 55424
952-925-2596 Judey Vessey Contact
623 975-6902 Kathy Temonto AZ state contact
www.k-t.org

Let's Face It - now run through the U of Michigan

Univeristy of Michigan

School of Dentistry

1011N Univeristy

Ann Arbor, MI  48109-1078

360-676-7325

http:www.faceitorg

Email:  faceit@umich.edu

"To support a person with facial difference, look them in the eyes and smile at them"  Besty Wilson founder

An informational and support network for people with facial difference, their families, friends and professionals.

"To support a person with a facial difference, look them in the eyes and smile at them."

LOVE Without Borders

http://www.jesus4you.com/index.html

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.   

Dr. Buckmiller has worked with this ministry and has operated on children through their work.

Lymphangiomatosis & Gorham's Disease Alliance

(LGD Alliance)

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

Web Site:

www.lgdalliance.org

Patient support & education, promoting advocacy, raising funds to find effective treatments and ultimately finding cures. 

Ollier Maffucci Support
Ollier disease and Maffucci syndrome

Parent to Parent USA

http://www.p2pusa.org/

Parent to parent access and qulity in support for parents.

International Chapters linked from US site

Sturge Weber Foundation

Karen Ball Executive Director
PO Box 418
MT Freedom, NJ 07970
www.sturge-weber.com

Message and Discussion Forum for NC families affected by vascular anomalies.

Vascular Birthmark Foundation- Europe

www.vbfeurope.org

SNAP:Special Needs Advocacy For Parents

888-310-9889

www.snapinfo.org

A non-profit parent network, has launched a Medical Insurance program dedicated to "help you understand your policy and problme solve your insurance neightmares" 

Australia:  Melissa V Downes Founder NOVA Australia  melissavorlicek@bigpond.com

Argentina

Canada:

MSN Message Board and Support Groups

http://groups.msn.com/LivingwithVascularAnomalies/general.msnw?action=get_threads For Adults and Parents of Children living with Vascular Anomalies.  This site is for those facing life issues with hemagnioma, VM, AVM, LM, PHACES and more.

http://groups.msn.com/hemangiomavascularmalformation  Support for Adults with Vascular Anomalies   

http://groups.msn.com/vascularbirthmarksupport     Support and Information for Hemangioma and other VA      

http://groups.msn.com/PhacesAssociationSupportGroup  ** Support Group for PHACES Families, need to join to view

http://groups.msn.com/PHACESyndromeCommunity      Support Group for Individuals affected by PHACES         

Other Message Board and Support Groups

www.phacesassociation.com** Support Group for PHACES Families, need to join to view

I-village/Parents Place Message Board and Support Group

http://messageboards.ivillage.com/iv-ppbirthmarks/messages?   

Reference Web sites

 http://www.emedicine.com/       Online reference for medical conditions

www.24dr.com/reference/encyclopaedia/strawberry.htm  Information about specific medical conditions & symptoms

http://medlineplus.gov/  A service of the US National LIbrary of Medicine,Encylopedia,Dictionary, Health Topics and more

http://www.nlm.nih.gov/  A NLM Medical Library resource

http://www.webmd.com/medical_information/condition_centers/default.htm  A-Z Information on Health Topics

http://www.dermweb.com/dermatology_resources/external.htm#Patient Non-profit, non-commerical informational resource for Dermatology related issues. 

Free round trip flight certificates for financially need patients and parents. Patients must be 21 or under. AA needs at least 21 days to set up a trip.

AA and Miles for Kids in need has flown over 50 HNL/NOVA families for medical treatment .

AA only offers one medical mission flight per patient.  Only the parent or legal guardian may fly with the child

Volunteer corp of private pilots who provide flights of hope and healing by transporting patiens & families for medical treatment.Contact for regional information.

*This group has been very easy to work with!

Due to the nature of the private flight small airplaines filghts can be cancelled for bad weather.

Continental CAREFORCE
2825 E Pebble Beach
Missour City, TX 77459
281-261-6626
rjack@springmail.com
Bob Jack Contact Corrdinator

LifeNet South Carolina formerly CareForce

1-800-327-2611 Emergency Transport

1-800-256-5886 Non Emergency Transport

http://www.lifenetsc.net/index.html

Transport for SC and surrounding states. 

Emergency and cricitical care patients.

Mercy Medical Airlift

1888-675-1450

National Patient Travel
http://www.patienttravel.org/

1800-296-1217

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.

NOVA Executive Director Karla Hall previewed this book for publishers and reccomends it for any parent for a child with special medical needs.

Funny Face by Debbie Breslow

http://members.aol.com/djbreslow/funnyface/index.html

The Resource Guide for a season and a lifetime.

NOVA recommends this book for all SWF patients and their families. 

Marked for Life by Joie Davidow

A Story of disguise, discovery and redemption
www.joiedavidow.com

"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. 

NOVA recommends this book for those affected by facial disfigurment and facial PWS

Gianna's Wild Strawberry

http://www.enter.net/~happymail/

Authored by Dana Guerrra, mother of a child with hemagnioma.  Dana wrote the book to give hope for families of chidlren with hemangioma

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. 

NOVA Executive Director Karla Hall previewed this book for publishers  and highly recommends it.

A common sense approach to plastic surgery and treatments.