International Treatment and Testing Resource Guide 2013 OUR MISSION To find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide. 1801 Willamette Street, Suite 200 Eugene, OR 97401 541-687-4658 Toll Free: 888-FANCONI (inside the US only) Fax: 541-687-0548 www.fanconi.org [email protected] Staff Beverly Mayhew, Executive Director .................................................... [email protected] Teresa Kennedy, Director of Family Support [email protected] Kristi Keller, Bookkeeper and Administrative Assistant [email protected] Kim Larsen, Conference and Publications Coordinator [email protected] To contact the staff by phone: Toll-free, in the US only: 888-FANCONI (888-326-2664) Outside the US: 541-687-4658 Table of Contents US FA Treatment Resources Bone Marrow Failure ..............................................................................................................1 Bone Marrow Donor Registries ............................................................................................11 Cord Blood Registries ...........................................................................................................12 Endocrinology .......................................................................................................................12 Gastroenterology ...................................................................................................................13 Genetic Counseling ...............................................................................................................13 Gynecology ...........................................................................................................................14 Hand Surgeons.......................................................................................................................14 Ophthalmology ......................................................................................................................15 Otolaryngology (Ear, Nose, Throat) and Head & Neck Cancer ............................................16 Pre-Implantation Genetic Diagnosis (PGD) ..........................................................................18 US FA Testing Resources ..................................................................................... 19 International FA Treatment Resources Australia ................................................................................................................................22 Austria ...................................................................................................................................23 Brazil .....................................................................................................................................23 Canada ...................................................................................................................................24 China .....................................................................................................................................24 Colombia ...............................................................................................................................24 Czech Republic ......................................................................................................................25 Denmark ................................................................................................................................25 France ....................................................................................................................................25 Germany ................................................................................................................................26 India .......................................................................................................................................26 Iran .........................................................................................................................................27 Israel ......................................................................................................................................27 Italy ........................................................................................................................................28 Japan ......................................................................................................................................28 Kenya .....................................................................................................................................29 Lebanon .................................................................................................................................29 Mexico ...................................................................................................................................29 Netherlands ............................................................................................................................30 New Zealand ..........................................................................................................................31 Saudi Arabia ..........................................................................................................................31 Singapore ...............................................................................................................................31 South Africa ...........................................................................................................................31 Spain ......................................................................................................................................32 Turkey ....................................................................................................................................33 United Kingdom ....................................................................................................................34 International FA Testing Resources...................................................................................35 Index of Institutions and Clinicians ..................................................................................38 US Fanconi Anemia Treatment Resource Guide Editors’ Note and Disclaimer: The resource list provided in this guide is not comprehensive. Inclusion on the list does not imply endorsement by the Fanconi Anemia Research Fund, Inc. Families are encouraged to ask clinicians about their experience treating patients with Fanconi anemia. BONE MARROW FAILURE Boston Children’s Hospital & Dana-Farber • Hematology: David A. Williams, MD; Colin Sieff, Cancer Institute, The Fanconi Anemia and MB BCh; Mary Cogan, CPNP, RN, CPHON • Molecular Diagnostics: Alan D’Andrea, MD; Lisa Bone Marrow Failure Multidisciplinary Moreau, MS, CLSpCG; Bai-Lin Wu, PhD, M Med Clinic FACMG, Ann E. Reinhard, MS, CGC Boston Children’s Hospital • Nephrology: Michael Ferguson, MD 300 Longwood Ave. • Otolaryngology: Reza Rahbar, DMD, MD, FACS Boston, MA 02115 • Pulmonary Medicine/Aero-Digestive Disorders: http://www.childrenshospital.org/fa-bmf Catherine Sheils, MD • Social Work: Susanna Locke, LCSW • David A. Williams, MD • Urology: Hiep (Bob) Nguyen, MD Telephone: 617-919-2697 Email: [email protected] Services Offered: □ Our Nurse Practitioner arranges a comprehensive • Colin Sieff, MB BCh evaluation for each new patient, including Telephone: 617-355-2367 confirmation of diagnosis, genetic typing, HLA Email: [email protected] typing, and a multi-system evaluation. The team • Mary Cogan, CPNP, RN, CPHON, Nurse carefully examines previous diagnostic test results Practitioner and past medical history to guide the initial Telephone: 617-355-8246 Fax: 617-730-0641 evaluation in the multi-disciplinary clinic. This results Email: [email protected] in a written summary and recommendations for the referring physician and the patient’s family. Ongoing Dana-Farber Cancer Institute care may continue at Children’s or in partnership 450 Brookline Avenue with the referring physician. Psychosocial support is Boston, MA 02215 available and an important part of our long-term care http://research.dfci.harvard.edu/dandrealab of families of patients with serious diseases. • Alan D’Andrea, MD □ A variety of innovative clinical trials are available Telephone: 617-632-2080 for enrollment. Two current studies for patients Email: [email protected] with Fanconi anemia are: 1) the use of danazol, an androgen and 2) a hematopoietic stem cell • Lisa A. Moreau, MS, CLSpCG transplantation trial for those lacking a genotypically Telephone: 617-632-6302 identical donor. Email: [email protected] □ Diagnosis of new FA patients through Clinical Specialists: Laboratory Improvement Act (CLIA) certified • Adolescent Medicine/Gynecology: Amy DiVasta, MD diepoxybutane (DEB) test. • Blood and Marrow (Stem Cell) Transplantation: □ Facilitation of DNA mutation identification via CAP/ Leslie Lehmann, MD CLIA certified DNA sequencing in the Laboratory • Cardiology: David Harrild, MD, PhD Medicine Department at Boston Children’s Hospital • Endocrinology: Laurie Cohen, MD coordinated with Dr. Bai-Lin Wu and Ann Reinhard. • Gastroenterology: Leonel A. Rodriguez, MD, MS Current available testing for FANCA, FANCC, and • Genetics: Jonathan Picker, MD, PhD; Pam Hawley, FANCG are listed