In 1973, the National Hemophilia Foundation launched a two-year campaign to establish the creation of a nationwide network of hemophilia diagnostic and treatment centers. The idea was based upon providing a range of comprehensive services for patients and families within one treatment facility. Today, there are about 141 federally-funded treatment centers and programs across the country.
The concept of comprehensive care is to treat the whole person and the family, through continuous supervision of all the medical and psychosocial aspects of bleeding disorders. Comprehensive care is total care because every facet of the person is addressed, including their physical, emotional, psychological, educational, financial and vocational factors. The development of comprehensive care over the past 30 years, has greatly improved the quality of life for people with bleeding disorders, helping them to be more independent and productive. The treatment center care network has also lowered patients morbidity and provided cost-effective care in the long term.
Having a chronic disease means spending a lot of time and energy negotiating the health care system. The hematologists, nurses, psychosocial professionals and physical therapists not only help consumers with their medical care issues, but also lend tremendous emotional support. Many people with bleeding disorders use the resources of their hemophilia treatment center (HTC) for many years because the staff understands their unique needs.
Individuals who go to hemophilia treatment centers will not only find state-of-the art medical care, but also benefit from an experienced, caring staff that takes time to develop comprehensive treatment care plans for patients and families. Hemophilia treatment centers are located in cities across the United States. To request a printed copy of the U.S. Hemophilia Treatment Centers Directory, contact HANDI at 800-42-HANDI or handi@hemophilia.org.
The treatment center not only provides specialty care but can also act as a resource to your regular family physician or dentist.
University of Arizona Health Sciences Center
1515 North Campbell Avenue
P.O. Box 245024
Tucson, AZ 85724
Phone: (520) 626-2816
Fax: (520) 626-7077
Adult after hours: (520) 694-6000
Comments: Ask for adult hematology provider on call
Pediatric after hours: (520) 694-6000
Comments: Ask for pediatric hemophilia provider on call
Website: https://azhtc.medicine.arizona.edu/
Contacts
HTC Director: Alison Stopeck - 520.626.2816
Adult Hematologist: Ravitharan Krishnadasan - 520-626-2816
Director of Pediatric Hemophilia: Brenda Wittman - 520-626-2816
Nurse Coordinator: Angela Tom - 520.626.7556
Primary Contact: Mary Lou Damiano - 520.626.7584
Social Worker: Laurel Pennick - 520.626.7494
1919 E. Thomas Rd
Bldg. B
Phoenix, AZ 85016
Phone: (602) 546-0920
Fax: (602) 546-0276
Adult after hours: (602) 546-0920
Comments: 24 hours a day, 7 days a week--call 602 546 0920 or 602 5460 1000.
Pediatric after hours: (602) 546-0920
Comments: 24 hours a day, 7 days a week--call 602 546 0920 or 602 5460 1000.
Contacts
HTC Director: Christine Knoll - 602.546.0920
Nurse Coordinator: Lori Wagner - 602.546.0168
Nurse Coordinator: Wendy Mitsuyama - 602.546.0171
Primary Contact: Patrick Willey - 602.546.0203
University of Colorado at Denver and Health Sciences Center
13001 E. 17th Place, WG109
PO Box 6507, MSF416
Aurora, CO 80045-0507
Phone: (303) 724-0362
Fax: (303) 724-0947
Adult after hours: (303) 372-0000
Comments: Adults Hemophilia & Thrombosis Ask for adult hematology fellow on call
Pediatric after hours: (303) 861-6776
Comments: Pediatric Hemophilia & Thrombosis Ask for pediatric hematology fellow on call
Contacts
HTC Director: Marilyn Manco-Johnson - 303.724.0365
Nurse Coordinator: Sue Geraghty - 303.724.3752
Primary Contact: Sue Geraghty - 303.724.3752
Regional Coordinator: Brenda Riske - 303.724.1330
Primary Children's Medical Center
100 N. Medical Drive
Salt Lake City, UT 84113
Phone: (801) 588-3477
Fax: (801) 588-2662
Adult after hours: (801) 581-2121
Comments: Ask for adult hematologist on call
Pediatric after hours: (801) 588-2000
Comments: Ask for pediatric hematolgist on call
Contacts
HTC Director: Hassan Yaish - 801.662.2116
Primary Contact: Sharon Paigne - 801.662.4726
MSC10 5590
1 University of New Mexico
University of New Mexico/Dept. of Pediatrics
Albuquerque, NM 87121-0001
Phone: (505) 272-6420
Fax: (505) 272-8699
Adult after hours: (505) 272-2111
Comments: Ask for adult hematologist/hemophilia doc on call OR call
Pediatric after hours: (505) 272-4461
Comments: Ask for peds hematologist on call OR call 800 UNM-PALS (800 866-7257) ask for peds hematologist doc on call
Contacts
HTC Director: Prasad Mathew - 505.272.5551
Nurse Coordinator: Jane Ellen Jones - 505.272.6420
Primary Contact: Jane Ellen Jones - 505.272.6420
This page contains contact information for Hemophilia Treatment Centers within Region VIII as well as online web resources for additional information about Hemophilia and other bleeding disorders.
This handbook is shared by Hemophilia of Georgia. All material is protected by copyright and all rights are reserved.
This section includes direct links to several websites related to coagulation disorders. The section has been subdivided as follows:
Bloodline
www.bloodline.net
Centers for Disease Control and Prevention
www.cdc.gov/ncidod/dastlr/Hematology/aboutHDB.htm
The Coalition for Hemophilia B
www.boygenius.com/cfb/
Hemophilia Emergency Care
www.hemophiliaemergencycare.com
Hemophilia Federation of America
www.hemophiliafed.org
Hemophilia Forum
www.hemophilia-forum.org
Hemophilia Nurses
www.hemophilianurse.org
Hemophilia Region VI
www.hemophiliaregion6.org
Hemophilia Region IX
www.hemophiliaregion9.org
Inalex Communications
www.inalex.com
LA Kelley Communications
www.kelleycom.com
National Heart, Lung, and Blood Institute
www.nhlbi.nih.gov
World Federation of Hemophilia
www.wfh.org
All about Bleeding
www.allaboutbleeding.com
FAIR Time for Women Coalition
www.ftfw.org
Project Red Flag
www.projectredflag.org
Shemophilia
www.shemophilia.org
Platelet Disorder Support Association
www.pdsa.org
National Alliance for Thrombosis and Thrombophilia
www.nattinfo.org
Factor V Leiden Thrombophilia Support
www.factorvleiden.org
American Association of Blood Banks
www.aabb.org
America's Blood Centers
www.americasblood.org
FDA Center for Biologics Evaluation and Research
www.fda.gov/cber
Plasma Protein Therapeutics Association
www.plasmatherapeutics.org
American Liver Foundation
www.liverfoundation.org
CDC Hepatitis Branch
www.cdc.gov/hepatitis
HCV Advocate
www.hcvadvocate.org
Hep C Connection
www.hepc-connection.org
Hepatitis B Foundation
www.hepb.org
Hepatitis Foundation International
www.hepfi.org
Hepatitis Magazine
www.hepatitismagazine.com
National Digestive Diseases Diseases Information Clearinghouse
http://digestive.niddk.nih.gov/ddiseases/topics/hepatitis.asp
HIV/AIDS
AIDS Education Global Information System
www.aegis.com
AIDS Info
www.aidsinfo.nih.gov
American Foundation for AIDS Research
www.amfar.org/index.html
The Body
www.thebody.com
CDC HIV/AIDS
www.cdc.gov/hiv
HIV and Hepatitis
www.hivandhepatitis.com
HIV Insite
hivinsite.ucsf.edu/InSite
Immune Deficiency Foundation
www.primaryimmune.org
National AIDS Treatment Advocacy Project
www.natap.org
National Institute of Allergy and Infectious Diseases
http://www.niaid.nih.gov/Pages/default.aspx
Project Inform
www.projectinform.org
American Society of Gene Therapy
www.asgt.org
Biotechnology Industry Organization (BIO)
www.bio.org
European Society of Gene Therapy
www.esgt.org
Human Genome Project Information
www.ornl.gov/hgmis/medicine/genetherapy.html
National Human Genome Research Institute
www.genome.gov
National Library of Medicine of NIH
www.nlm.nih.gov/medlineplus/genesandgenetherapy.html
Dental Care
New Mouth - https://www.newmouth.com/dentistry/
Additional Online Resources:
https://guides.library.harvard.edu/c.php?g=309834&p=2076793
http://libguides.mssu.edu/c.php?g=185228&p=1223711
http://gerontology.wp.uncg.edu/resources/
Consumer Safety
https://www.consumersafetyguide.com/
Addiction Resource
www.addictionresource.com
Health Finder
www.healthfinder.gov
Medicare Plans in Arizona