C

CardioFacioCutaneous Syndrome

CardioFacioCutaneous Support Network

• People served: Individuals and their families dealing with CardioFacioCutaneous
• Services provided: Information and referral, support services, registry, and printed materials
• Address: 157 Alder Avenue, McKee City NJ 08232
• Phone number: (609) 646-5606
• Contact people: John & Nancy Carlson

CHARGE Syndrome

CHARGE Syndrome Foundation

• People served: Individuals and families dealing with CHARGE Syndrome
• Services provided: Information and referral and support
• 2004 Parkade Boulevard, Columbia MO 65202-3121
• Phone numbers: 1-800-442-7604 (Families Only) or (573) 499-4694
• Contact person: Marion Norbury
• Email address: marion@chargesyndrome.org or mnorbury@coin.org
• Website: http://www.chargesyndrome.org/

Minnow's CHARGE WebPage

• People Served: Individuals and families dealing with CHARGE Syndrome
• Services provided: Listserv, online and offline resources, realtime chats, and photo gallery
• Contact person: Casey Fisher
• Email address: charge@saber.net
• Website: http://www.geocities.com/Heartland/1220/

Chromosome Deletions, Chromosome Deletions, Additions, Inversions, Translocations and Rings

Chromosome Deletion Outreach

• People served: Families dealing with chromosomal abnormalities
• Services provided: Support and information, chats, email support group
• Address: P.O. Box 724, Boca Raton FL 33429-0724
• Phone number: (888) CDO-6880 Toll-Free 12PM - 7PM EST
• Email address: cdo@worldnet.att.net

Cleft Lip and/or Palate

Cleft Pals (Australia)

• People served: Individuals and families dealing with cleft lip and/or palate
• Services provided: Information, support and chapters throughout Australia
• Address: P.O. Box 475, Lane Cove, NSW 2066
• Phone number: (08) 028389313 

Cleft Lip and Palate Association (CLAPA) (United Kingdom)

• People served: Parents of children with cleft lip and/or palate
• Services provided: Information and support and chapters
• Address: 134 Buckingham Palace Road, London SW1W 9SA
• Phone number: 0171 824 8110

Prescription Parents (United States)

• People served: Parents of children who were born with cleft lip and cleft palate
• Services provided: Information and referral, support, advocacy positions, and printed materials
• Address: 22 Ingersoll Rd., Wellesley MA 02181
• Phone number: (781) 431-1398
• Contact person: Barbara Seltzer
• Email address: seltzer@samizdat.com
• Website: http://www.samizdat.com/pp1.html

Cleft Lip and/or Palate and/or Other Craniofacial Anomalies

The Cleft Palate Foundation

• People served: Individuals and families dealing with cleft lip and/or palate and/or other craniofacial anomalies
• Services provided: CLEFTLINE and publications
• CPF National Office: 104 South Estes Drive, Suite 204, Chapel Hill NC 27514
• Phone number: (919) 933-9044
• Fax number: (919) 933-9604
• CLEFTLINE: 1-800-24-CLEFT (24 hour, toll free)
• Website: http://www.cleftline.org

Smiles

• People served: Families dealing with cleft lip and/or palate and/or other craniofacial anomalies
• Services provided: Information exchange, stories, and discussion list
• Email address: help@cleft.org
• Website: http://www.cleft.org/

Wide Smiles

• People served: Adults, teens, and families dealing with cleft lip and/or palate and/or other craniofacial anomalies
• Services provided:
• Offline: Quarterly magazine, information and referral, and support
• Online: Photo gallery, listserv, realtime chats, Cleft-Links, files by email, doctor's guide, Journey's End for adults with clefts and/or other craniofacial anomalies, Kidz section, and online and offline resources
• Address: PO Box 5153, Stockton CA 95205-0153
• Phone number: (209) 942-2812
• Contact person: Joanne Green
• Email address: JoSmiles@aol.com
• Website: http://www.widesmiles.org/

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation

• People served: Families dealing with Coffin-Lowry Syndrome
• Services provided: Information and referral, support, registry, printed materials, and newsletter
• Address: 3045 255th Avenue S.E., Sammamish WA 98075
• Phone number: (425) 427-0939 after 5:30 p.m. PST
• Contact person: Mary C. Hoffman, Chair
• Email address: clsfoundation@yahoo.com
• Website: http://clsf.info
• Group Discussion: http://groups.yahoo.com/group/clsfoundation/

Coffin-Siris Syndrome

Coffin-Siris Syndrome Support Group (Canada)

• People served: Families dealing with Coffin-Siris Syndrome
• Services provided: Networking
• Address: 190 Kennedy Street, Nanaimo BC V9R 2H7
• Contact person: Pat McCue
• Email address: mccue@nanaimo.ark.com

Coffin-Siris Syndrome Support Group (United States)

• People served: Families dealing with Coffin-Siris Syndrome
• Services provided: Networking
• Address: 1524 Marshall Street, Antioch CA 94509
• Contact person: Juanita Garrison
• Email address: jxgarris@aol.com

Cohen Syndrome

Cohen Syndrome Support Group

• People served: Individuals and families dealing with Cohen Syndrome, Mirrhosseini Holmes Walter Syndrome, and Pepper Syndrome
• Services provided: Support, networking, and printed materials
• Address: 7 Woods Court, Brackley Northants NN13 6HP
• Phone number: 0(12(8)0) 70--4515

Cornelia de Lange Syndrome

Cornelia de Lange Syndrome Foundation

• People served: Families who have children with Cornelia de de Lange Syndrome
• Services provided: family support, bi-monthly newsletter, international conference, written materials and videos, and research
• Address: 302 West Main Street, #100 Avon CT 06001 - USA
• Phone numbers: 1-800-753-CdLS or 1-800-223-8355 (U.S. and Canada) or (860) 676-8166
• Contact person: Julie A. Mairano
• Email address: cdlsintl@iconn.net
• Website: http://cdlsoutreach.org/

Costello Syndrome

International Costello Syndrome Support Group

• People served: Parents of children with Costello Syndrome
• Services provided: Support and information
• Address: 90 Parkfield Road North, New Moston Manchester M40 3RQ
• Phone number: (161) 682-2479
• Contact person: C. A. Stone
• Email address: c.a.stone@mmu.ac.uk

Craniofacial and Other Facial Anomalies

AboutFace International

• People served: Individuals and families dealing with craniofacial and other facial anomalies
• Services provided: Networking, publications, school programs, chapter development, hospital support visits, and public awareness
• Address: 123 Edwards Street #1003, Toronto, Ontario, M5G 1E2, Canada
• Phone numbers: 1-800-665-FACE (3223) or (416) 944-3223
• Email: info@aboutfaceinternational.org
• Website: http://www.aboutfaceinternational.org

AboutFace USA

• People served: Individuals and families dealing with craniofacial and other facial anomalies
• Services provided: Networking, publications, school programs, chapter development, hospital support visits, and public awareness
• Address: P.O. Box 458, Crystal Lake, IL 60014
• Phone number: 1-888-486-1209
• Fax number: 815-444-1943
• Contact Person: Rickie Andersen
• Email address: AboutFace2000@aol.com
• Website: http://www.aboutfaceusa.org

Changing Faces (United Kingdom)

• People served: Individuals and families dealing with all types of facial anomalies
• Services provided: Workshops. information, and public awareness
• Address: 1 & 2 Junction Mews, Paddington, London W2 1PN
• Phone number: 0171 706 4232
• Contact person: James Partridge

Children's Craniofacial Association

• People served: Families with children who have craniofacial anomalies
• Services provided: Toll-free 800 number for physician referral and emotional support, workshops and symposiums, financial assistance with secondary costs (costs associated with traveling out of town for surgery), educational materials, advocacy, public awareness, annual weekend retreat with Cher, and free medical clinics
• Main Office: P.O. Box 571097, Dallas TX 75228
• Phone number: (972) 240-7730
• Fax number: (972) 240-7607
• Nationwide phone number: 1-800-535-3643
• Email address: contactCCA@ccakids.com
• Website: http://www.ccakids.com

Craniofacial Foundation of America (CFA)

• People served: Individuals and families dealing with craniofacial anomalies
• Services provided: Financial assistance for non-medical expenses, support services, and educational information
• Tennessee Craniofacial Center: 975 East Third Street, Chattanooga TN 37403
• Phone numbers: 1-800-418-3223 or (615) 778-9192
• Contact person: Terri Farmer

Craniofacial Support Group (United Kingdom)

• People served: Individuals and families dealing with craniofacial anomalies
• Services provided: Occasional social gatherings, annual conference, information on various craniofacial anomalies
• Address: 44 Helmsdale Road, Leamington Spa, Warwickshire CV32 7DW
• Phone number: 01926 334629
• Contact person: Steve Moody, Chairman
• Email address: SJMoody@compuserve.com

FACES (National Association for the Craniofacially Handicapped)

• People served: Individuals and families dealing with craniofacial anomalies
• Services provided: Information and referral, peer support, printed materials (fact sheets, newsletter, brochures, resource guide), speakers, financial assistance for medical treatment and/or travel
• Address: PO Box 11082, Chattanooga TN 37401
• Phone number: 1-800-332-2373 or (423) 266-1632
• Contact person: Lynne G. Mayfield
• Email address: faces@mindspring.com

Forward Face

• People served: Individuals and families dealing with craniofacial or other facial anomalies
• Services provided: Support, advocacy, liasion with medical personnel, newsletter, and videotapes
• Address: 317 E. 34th St., 9th Fl., Room 901A, New York NY 10016
• Phone numbers: 1-800-422-FACE or (212) 684-5860
• Contact people: Toni Bao or Barbara Robinson

 Kristina Cassidy Children's Foundation, Inc.

• People served: Children under the age of 21 and their families
• Services provided: Case management, information and referral, financial assistance, public awareness, and monthly support group
• Address: 4379 Anna Ln., West Palm Beach FL 33406
• Phone numbers: 1-888-292-9365 or (561) 641-3048
• Contact person: Lizabeth Scott
• Email Address: kristinacassidyfoundation@worldnet.att.net or info@kristinacassidy.org

Let's Face It (United Kingdom)

• People served: Individuals and families dealing with craniofacial or other facial anomalies
• Services provided: Peer support, information and referral, and education
• Address: 14 Fallowfield Yateley, Surrey GU17 7LW
• Phone number: 01252 879630
• Fax number: 01252 872633
• London Office: 62 Fortescue Road, Edgware, Middlesex HA8 0HN
• Phone/Fax number: 0181 9312829
• Contact person: Christine Piff
• Website: http://www.letsfaceit.force9.co.uk/

Let's Face It (United States)

• People served: Individuals and families dealing with craniofacial or other facial anomalies
• Services provided: Peer support and resource book
• Address: Box 29972, Bellingham WA 98228-1972
• Phone number: (360) 676-7325
• Contact person: Betsy Wilson
• Email address: letsfaceit@faceit.org
• Website: http://www.faceit.org/

National Foundation for Facial Reconstruction (NFFR)

• People served: Individuals and families dealing with craniofacial or other facial anomalies
• Services provided: Information and referral, support and professional counseling, financial assistance for medical care or transportation, and research grants
• Address: 317 East 34th Street, Rm 901, New York NY 10016
• Phone number: (212) 263-6656
• Contact person: Calliope Ligelis

Cri Du Chat Syndrome

Please note: This syndrome doesn't necessarily involve craniofacial or facial reconstruction.

Cri Du Chat Syndrome Support Group (United Kingdom)

• People served: Families delaing with Cri Du Chat Syndrome
• Services provided: 
• Offline: Support and friendship, information and referral, public awareness, fundraising for research, annual conference, and newsletter
• Online: Chatroom, message board, photo gallery, and links to international support groups
• Mrs. Angela Stokes, National Co-ordinator
• Address: 7 Penny Lane, Barwell Leicester England LE9 8HJ
• Email address: cdcssg@yahoo.co.uk
• Website: http://www.personal.u-net.com/~cridchat/

5p- Society (United States and Canada)

• People served: Families dealing with Cri Du Chat syndrome
• Services provided: Family support, newsletter, reference library, annual national meeting, research support, and photo gallery
• Contact people:
• Canada
• Nadine Nicholoson at (604) 964-7747
• United States
• Midwestern States
• Joan Steele at (618) 687-3006 (after 6pm CST)
• Northeast & Mid-Atlantic
• Pam Frayn at (847) 991-9408
• Plains States & Texas
• Susan Kringle at (308) 745-1434
• Rocky Mountain States
• Crystal Marshall at (316) 669-8367
• Southeast
• Deana Bryant at (501) 327-1594
• West Coast
• Kathy Phelps at (970) 259-3588
• Website: http://www.fivepminus.org/

Crouzon Syndrome

Crouzon Support Network

• People served: Individuals and families dealing with Crouzon's Syndrome and other craniofacial anomalies
• Services provided: 
• Offline: Information and referral and support
• Online: Listserv, realtime chat, and photo gallery
• Address: P.O. Box 1272, Edmonds WA. 98020
• Phone number: (425) 672-1697
• Contact person: Penny Halverson
• Email address: penny@crouzon.org
• Website: http://www.crouzon.org

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