National EB Organizations
DebRA of America - Dystrophic Epidermolysis Bullosa Research Association. "A voluntary, non-profit organization dedicated to finding a cure for Epidermolysis Bullosa (EB)"
EB Nurse - "When someone in your family has EB, you need help. This site contains up-to-date and practical information about EB and the treatment and care required to minimize the impact on the individual and family living with this disorder. You can find information and guidance on the many everyday
EB issues and challenges. This site is not only for families, but practitioners, too."
National Epidermolysis Bullosa Registry (NEBR) - "The overall goal of this project since its inception has been to precisely define all types and subtypes of EB, using state-of-the art epidemiological and laboratory techniques, as facilitated by the establishment of a nationally based rare disease registry."
Kisses for Katie - "Kisses for Katie Foundation is a Not-For-Profit, Tax-Exempt Organization under IRC Sect 501(c)3, whose purpose is to raise the necessary funds for EB patients care, and to educate the public on the genetic disorder Epidermolysis Bulosa or EB."
Epidermolysis Bullosa Action Network (EBAN) - The Epidermolysis Bullosa Action Network is an organization committed to accomplishing the following objective: To improve the financial quality and emotional stability of EB families.
Have a Heart for EB - "...A trip to Walt Disney World is one place where these children can be children, enjoying the magic of childhood. For the first time, many will be meeting other children who suffer from EB as they do. With some help, families come from far away to be able to join others who suffer from this painful, and often isolating disorder."
Noelle Hermes Foundation - "All donations will go into the Noelle Hermes Foundation, a non-profit organization. Funds will be used in two ways: for research, to help find a cure for EB; and to help alleviate the financial burden to numerous EB families who have specific medical needs that are not being met by their insurance."
Befriend EB - "befriend EB is a volunteer nonprofit organization dedicated to support the needs of those suffering from Epidermolysis Bullosa."
Wayne-Westland Friends of Epidermolysis Bullosa (WWFEB) - "OUR MISSION: To support the needs of families in the greater Wayne- Westland area who have EB (Epidermolysis Bullosa), to promote EB awareness and education, and to encourage those searching for a cure. When possible, help financially those families with EB to ease the burden of medical treatment and other needs. When practical, give physical support to those families with EB. Fund EB research to find a cure for the disease. Enhance EB awareness to our community. Bring families of EB together by maintaining a strong communications network."
EBAers - Support for people with EB Acquisita
National EB Support Groups
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California Northern California EB Support Group
Contact: Lorraine Spaulding
Phone: 209-862-1315
Southern California EB Support Group
Contact: Gloria Lira
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Connecticut EB Support Group of Connecticut
Contact: Laura Morris
Contact: Brenda Gionfriddo
Phone:860-721-0848
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Florida Florida EB Support Group
Contact: Sally Contreras
Phone: 786-487-8593
Contact: Sara Denslaw
Phone: 407-574-8613
DebRA Florida Support Group
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Georgia Contact: Sandy Adams
Phone: 770-534-4489
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Indiana Indiana EB Support Group
Contact: Bruce Gunn
Phone: 765-292-2327
Contact: Kathy Crecelius
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Kentucky Contact: Leslie Rader
Phone: 502-742-1954
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Maine Contact: Sue Chapman
Phone: 207-767-4581
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Michigan DEBRA of America, Michigan Chapter
Address: Post Office Box 1124, Sterling Heights, MI, 48311-1124
Contact: Julie Turner, executive director
Phone: 819-978-9244
Fax: 810-978-9247
Kisses for Katie
Contact: Sandy or Jim Paratore
Wayne/Westland Friends of EB
Contact: Robin Holbrook
Phone: 734.844.1899
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Minnesota Minnesota EB Support Group
Contact: Emily Holloway
Phone: 952-484-3318
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New England New England EB Support Group
Contact: Liane Ottley-Torres, Sherri Wade or Kevan Lewis
Phone: 401-277-9883 or 781-341-0232 or 401-351-6921
New England EB Support Group #2
Contact: Troy Medeiros
Phone: 978-688-7652
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New Hampshire Contact: Sue Chapman
Phone: 207-767-4581
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New Jersey New Jersey EB Support Group
Hackensack University Hospital, Don Imus Pediatric Center
Contact: Doreen Holstein
Phone: 201-358-6242
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New Mexico New Mexico Support Group
Contact: Debbie Kay Hatley of Albuquerque
Phone: 505-345-0287
Contact: Linda Rosenbloom of Las Cruces
Phone: 505-523-7385
Tammy Bradley of Las Cruces
Phone: 505-523-2952
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New York New York EB Support Group
Contact: Faye Dilgin
Phone: 718-227-3201
DebRA New York Support Group
Contact: Kathy Twible
Contact: Michele Disco
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North Carolina DebRA North Carolina Support Group
Contact: Connie Flowers
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Ohio Cincinnati EB Support Group
Contact: Connie-Danell Yates
Phone: 513-242-4874
Central Ohio EB Support Group
Contact: Molly Barber
Phone: 740-362-0172
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Pennsylvania EB Support Group of Hershey Pennsylvania
Address: Penn State Milton S. Hershey Medical Center
Mohler Senior Center
660 Cherry Drive
Hershey, PA 17033
Phone: 717-442-0277
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Texas Texas EB Support Group
Contact: Draha Brejchova
Phone: 281-980-4746
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Utah
Contact: Christie Norton
Phone: 801-229-2835
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International DebRA Organizations
DebRA International - "DEBRA International is an umbrella group whose members are the national associations representing people with epidermolysis bullosa (EB) in their countries."
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Australia Contact: Michael Fitzpatrick (President)
Address: PO Box 226, Pittsworth, Qld, Australia 4356.
VIC
Contact: Deb Holmes
Address: P.O. Box 186 Burwood VIC 3125
Phone: 03 9889 9780
Fax: 03 9889 1022
NSW
Contact: Alison Schossow (Secretary)
Phone: 02 63 794 294
QLD
Contact: Kathy Hagan (President)
Phone: 07 46 344 912
South Australia
Address: DebRA A (SA) Inc PO Box 243 Kingston South Australia 5275 Australia
Phone: 61 (08) 87672871
Fax: 61 (08) 87673036
Mobile: 61 0427672871
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Austria Contact: Dr Rainer Riedl
Address: DebRA-Austria, Heumarkt 27/3, 1030 Wien, Austria
Phone: 43 1 876 40 30
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Austria Contact: Dr Rainer Riedl
Address: DebRA-Austria, Heumarkt 27/3, 1030 Wien, Austria
Phone: 43 1 876 40 30
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Belgium VZW - ASBL
Contact: Ingrid Jageneau
Address: Bilzersteenweg 336, 3700 Tongeren,Belgium
Phone: 32 012/23 72 46
Fax: 32 012/39 38 71
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Bulgaria AEBE Dept of Dermatology & Venerology, Pleven Medical Institute, Pleven
Contact: Dr. I Yordanova
Phone: 359 64 2 21 2 , 359 64 2 91 53
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Canada Address: DebRA Canada Postal Office Fruitland, Box No. 11111, Stoney Creek, Ontario L8E 5P9
Phone: 1 800 313 3012
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Chile Contact: Loreto Moore I.
Phone: 56-2 356 0011
Fax: 56-2 492 8388.
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Costa Rica Contact: Judy Paskel-van der Wielen ( Treasurer)
Address: Fundación DebRA de Costa Rica
P.O.B. 69, SAn José 2120, Costa Rica
Phone: 506-244-3318
Fax: 506-244-3318
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Croatia Address: DEBRA, drustvo oboljelih od bulozne epidermolize
Prilaz Gjure Dezelica 30, 10000 Zagreb, Croatia
Phone: 385 1 4555200
Fax: 385 1 4555199
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Czech Republic Contact: Magda Hrudkova
Address: DebRA Czech Republic
Department of Pediatric Dermatology
University Hospital Brno
Cernopolni 9
625 00 Brno
Czech Republic
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Denmark Contact: Jan Madsen
Contact: Jesper Bonning
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Finland Contact: Liina Harkonen
Address: Pyynikintori 8A3, 33230 Tampere, Finland
Phone: 044 5577065
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France Address: Pascal BOURGET, 20 ruelle du jardin Ravillonet - 95470 SAINT WITZ
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Germany Address: IEB-DebRa Deutschland
Netty Müller-Grosse
Schwarzer Weg 9
58739 Wickede a.d.Ruhr
Phone: 49 2377 6217
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Hong Kong Contact: Ted & Phoebe Leung
Address: Rm 504, Fu Yat House, Tai Wo Hau Est. Tsuen Wan
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Hungary Contact: Márta Csikós MD
Address: Semmelweiss University of Medicine, Dept of Dermatology & Venereology,
Budapest, Mária u. 41 H-1085
Phone: 36 1 266 0465
Fax: 36 1 210 4874
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Ireland Contact: Margaret Webb
Address: DEBRA Ireland 3/4 Upper Pembroke Street, Dublin 2.
Phone: 353 1 678 5044
Fax: 353 1 678 5232
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Italy Contact: Paola Zotti
Gruppo Pugliese per l’Epidermolise Bollosa,
Address: Via Gusti 28, 74023 Grottaglie (TA) Danilio Buonocunto
Phone: 39 99 561 0323
Fax: 39 99 561 9182
Debra Südtirol - Alto Adige
Address: Isolde Faccin bRienzweg 12/d - BZ I-39034 Toblach
Phone: 39 0474 972004
Fax. 39 0474 972887
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Japan Contact: Ms. Emiko Sato
Address: ASEBI-KAI 3-18-9-204, Sengoku, Bunkyo-ku, Tokyo 122 Phone: 81 339437008
Fax: 81339446460
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Mexico Contact: Dr Julio Salas
Address: Fundación DebRA Mexico AC,
Nahua 162 Azteca, Guadaloupe N.L. 67150
Phone: 52 367 6060
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Netherlands Contact: Yvonne Sellies (Consultant)
Address: DEBRA NEDERLAND.
Postbus 3160 3760 DD SOEST The Netherlands
Phone: 0031 35 6018977
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New Zealand Contact: Anna Kemble Welch (Director)
Address: DebRA NZ, 123 Daniell Street,Newtown, Wellington, New Zealand.
Phone: 64 4 389 7316
Fax: 04 389 7316
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Norway Address: DebRA Norway co Ruth Bernssen Bø, 4365 Nærbø Norway
Phone: 47 0047 3279 4387
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Poland Contact: DebraPolska- Fragile Touch
Przemyslaw Sobieszczuk ,
Magda Onyszko-Skowron
Stowarzyszenie "Kruchy Dotyk"
M.C. Sklodowskiej 127/2/29
Piekary Slaskie Polska
41-949
Phone: 0501 316 217 / 0504 262 871
Fax: 032 381 53 17
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Portugal Contact: Dr. Antonio Jose Coelho Capelo
Address: NEB. Hospital Pediatrico Coimbra, 3000 Coimbra
Phone: 351 39480376
Fax: 351 39484464
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Romania Contact: Dr. Sanda Florian
Address: Debra Association
Children Hospital Brasov str Nicopole 43-45 Brasov, Romania.
Phone: 0040 268 41 51 30 ext 159
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Slovenia Address: DEBRA Slovenia
Motnica 3, 1236 TRZIN
Phone: 386(0)31 348 303
Fax: 386(0)3 800 14 16
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South Africa Address: Penny West, 170 Curzon Road, Bryanston, Gauteng
Phone: 46 (0)11 799 7111
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Sweden Address: Malin Netz, SEBF/DEBRA Sweden, Kronobergsgatan 6, 112 33 STOCKHOLM
Phone: 46 (0)8 652 67 15
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Switzerland Address: Tanja Pauli. DebRA CH, Birkenweg 102, 3123 Belp. Switzerland
Phone: 41 31 879 14 88
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Spain Contact: Evanina M Makow
Address: AEBE – DebRA SPAIN
C/ Real. Conjunto Puertogolf. Apartamento 36. 29660 Nueva Andalucía. Málaga.
Phone/Fax: 952 816434
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United Kingdom Contact: John Dart
Address: DebRA UK
13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire RG45 6LS
Phone: 44 1344 771961
Fax: 44 1344 762661
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USA Contact: Suzanne Cohen (Executive Director)
Address: DebRA of America inc, 5 W. 36th St. Suite 404
New York, NY 10018
Phone: 1-212-868-1573
Fax: 1-212-868-9296
Contact: Geri Kelly-Mancuso, RN, Adele Jones Westbrook, RN (DebRA Nurses)
Phone: 1-866-332-7276
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Please visit the DebRA International site for an up to date list of international support groups and their contact information.
