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Index of FAQ PART XII: IMPORTANT INFORMATION
XII.1.0 What Else is Important to Know About HCV? XII.1.1 HCV Information Resources and Support Groups XII.1.1a USA XII.1.1b Canada XII.1.1c Argentina XII.1.1d Australia/New Zealand XII.1.1e England/Scotland XII.1.1f Germany/Austria XII.1.1g Spain XII.1.1h Uruguay XII.1.1i Israel XII.1.2 HCV Resources on the Internet and Usenet XII.1.3 Bibliography: Suggested Reading XII.1.4 Newsletters, Magazines and Videos
APPENDIX A: Where to Get the Current Version of the FAQ APPENDIX B: Common Abbreviations and Medical Terms APPENDIX C: Some Recommended World Wide Web Sites APPENDIX D: A List of Canadian Doctors Specializing in the treatment of HCV APPENDIX E: History of Blood Safety, Canada’s Track Record, and Compensation Issues APPENDIX F: The Double Challenge of HIV/HCV Co-infection
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PART XII - IMPORTANT INFORMATION
XII.1.0 WHAT ELSE IS IMPORTANT FOR ME TO KNOW ABOUT HCV? Medical research and acceptance of the illness will develop only if our national support organizations which promote them are strong. Be sure to support your national groups, and when your national group calls for letters and phone calls to be sent to public officials and media, please get your family and friends to assist you in responding to those requests. We may be able to make greater achievements if we act in unison. In the USA, the largest source of research money comes from government allocations. Therefore, contacting your Congressman about the importance of Hepatitis research is very important. Did you know ?...... The World Health Organization estimates that three in every hundred humans have the hepatitis C virus, and that this number is increasing! “WHO estimates that about 170 million people, 3% of the world’s population, are chronically infected with HCV,” and 3 to 4 million persons are newly infected each year." http://www.who.int/inf-fs/en/fact164.html
In the USA: 28.5 times MORE people are infected with Hepatitis viruses than with HIV. 150,000 - 180,000 new cases of Hepatitis C are expected this year. 200,000 - 250,000 new cases of Hepatitis B are expected this year. 40,000 new cases of HIV are expected this year. 8,000 - 12,000 Hep C patients are expected to die in 1997 Since close to 4 million people in the U.S. have HCV, it is the most prevalent chronic viral infection in the United States, and possibly the world. Interferon alone or in combination successfully treats between only a few HCV patients, despite what the drug companies would have you believe. Furthermore when you read the actual research articles you will find that many of the leading researchers are not happy with interferon, which they see as too expensive, and as carrying too many side effects. Remember, to the drug companies profits are the first objective, so question all statistics carefully. Speaking about cure rates from interferon monotherapy (1996), Dr. Lerner says this: “Assuming a "cure" rate of 8 - 15% in the 5 - 15% who would potentially benefit from treatment, one comes to an estimated improvement in outcome in only 0.4 - 2.25% of patients. Even this higher number is doubtful since the group with the most aggressive disease tends to have the lowest response to interferon..” From “Hepatitis C – A Silent Epidemic” by Dr. Steven E. Lerner http://www.lectlaw.com/med/med17.htm The HCV virus has a half-life of approximately six hours - in other words, if you start with two million, six hours later there are three million, etc. Hence the 3mu three times per week interferon dosage is not the most effective. HCV is the leading indication for liver transplants. According to the New York Blood Center, as many as 25% of people receiving blood transfusions in the early 1960s were being infected with contagious diseases and the majority were infected with hepatitis. About one-third of hepatitis B and C cases result from unknown sources. This means someone does not have to be among the high-risk groups to become infected with the virus.
XII.1.1 HCV INFORMATION RESOURCES
XII.1.2 NATIONAL (USA)
· The American Liver Foundation have very nice, down-to-earth pamphlets on Hepatitis and Interferon and stuff, which they will send to you by calling their number: 1-800-223-0179 The American Liver Foundation also provides physician referrals. American Liver Foundation , 1425 Pompton Avenue, Cedar Grove, NJ 07009
· The American Liver Foundation Liver Transplant Fund Program. Provides liver transplant patients with fundraising guidance; trusteeship and administration of patients’ funds at no charge; educational information about liver diseases and transplantation; information brochures as well as brochures on policies, procedures and fundraising.
For more information, including application form, resources list, and patient agreement form, please contact the ALF Liver Transplant Fund Program at : 1-800-GO-LIVER (465-4837) Fax (201)256-3214 Email txfund@liverfoundation.org · The Hepatitis Foundation International, 30 Sunrise Terrace, Cedar Grove, New Jersey 07009, USA. HIF’s toll free line for callers in North America is 1-(800) 891-0707 www.hepfi.org · National Digestive Diseases Information Clearinghouse: (301) 654-3810. · National Institute of Diabetes and Digestive Diseases at (301) 496-3583, but they simply refer you to the Digestive Diseases Clearinghouse number listed above. · The CDC Hepatitis Branch Hotline numbers are (888) 4HEPCDC, (888) 443-7232 or (404) 332-4555. The voice mail allows you to request Faxed information to be sent to you or you can listen to a recording. · Gammagard: Robins, Kaplan, Miller & Ciresi is a national (USA) law firm with offices in eight U.S. cities including Minneapolis and St. Paul. CONTACT: Philip A. Pfaffly, 612-349-0820, or Gary L. Wilson, 612- 349-8413, both of Robins, Kaplan, Miller & Ciresi, or Gail D. Shore, 612-925-6102 of Shore to Shore Communications. · American Chronic Pain Association, Inc., P.O. Box 850, Rocklin, PA 95677, (916)632-0922. 500 Chapters in the United States, Canada, Australia, New Zealand, and Russia. Provides a support system for those suffering chronic pain. · U.S. Medic Alert: Medic Alert, P.O. Box 381009, Turlock, CA 95381-9009,1-800-432-5378 Canadian Medic Alert: Medic Alert, P.O. Box 0988 Don Mills, Ontario, Canada M3C2T9 1-800-668-1507 Tax deductible. Chains, bracelets in a variety of styles. $35.00 Includes important info for medics. 1-800 # is engraved, and when called, any info you supplied to Medic Alert is given to medic/nurse/dr. Wallet size card with dr. name, # and emergency contact, etc. included · Thyroid Foundation of America, Inc., ACC 630, Massachusetts General Hospital, Boston, MA 02114 (617)726-8500 Provides health education and support for thyroid patients and health care professionals. · The Well Spouse Foundation, P.O. Box 28876, San Diego, CA 92198 (619)673-9043 (914)357-8513 Support groups; gives emotional support to spouses of the chronically ill; raises consciousness of professionals to the plight of the well spouse; advocates for legislative changes in insurance coverage for respite care and long-term care; produces a bi-monthly newsletter, WSF Newsletter. · Agency for Health Care Administration, HMO/Managed Care Hotline, Toll Free: 1-800-226-1062 The HMO/Managed Care Hotline is a toll free telephone line maintained by the Agency for Health Care Administration to quickly respond to emergency or urgent quality of health care complaints and concerns by members of HMO’s and managed care organizations. The Hotline is available between 8 a.m. and 5 p.m., Monday through Friday and is answered by experienced, registered nurses who work with members to resolve problems. · A good source of patient contacts is narcotics anonymous groups or drug-abuse recovery groups. Many people in these groups have hep C and they meet regularly and pass information around a lot. --- · The American Liver Foundation have very nice, down-to-earth pamphlets on Hepatitis and Interferon and stuff, which they will send to you by calling their number: 1-800-223-0179 The American Liver Foundation also provides physician referrals. American Liver Foundation , 1425 Pompton Avenue, Cedar Grove, NJ 07009
· The American Liver Foundation Liver Transplant Fund Program. Provides liver transplant patients with fundraising guidance; trusteeship and administration of patients’ funds at no charge; educational information about liver diseases and transplantation; information brochures as well as brochures on policies, procedures and fundraising.
For more information, including application form, resources list, and patient agreement form, please contact the ALF Liver Transplant Fund Program at : 1-800-GO-LIVER (465-4837) Fax (201)256-3214 Email txfund@liverfoundation.org · The Hepatitis Foundation International, 30 Sunrise Terrace, Cedar Grove, New Jersey 07009, USA. HIF’s toll free line for callers in North America is 1-(800) 891-0707 www.hepfi.org · National Digestive Diseases Information Clearinghouse: (301) 654-3810. · National Institute of Diabetes and Digestive Diseases at (301) 496-3583, but they simply refer you to the Digestive Diseases Clearinghouse number listed above. · The CDC Hepatitis Branch Hotline numbers are (888) 4HEPCDC, (888) 443-7232 or (404) 332-4555. The voice mail allows you to request Faxed information to be sent to you or you can listen to a recording. · Gammagard: Robins, Kaplan, Miller & Ciresi is a national (USA) law firm with offices in eight U.S. cities including Minneapolis and St. Paul. CONTACT: Philip A. Pfaffly, 612-349-0820, or Gary L. Wilson, 612- 349-8413, both of Robins, Kaplan, Miller & Ciresi, or Gail D. Shore, 612-925-6102 of Shore to Shore Communications. · American Chronic Pain Association, Inc., P.O. Box 850, Rocklin, PA 95677, (916)632-0922. 500 Chapters in the United States, Canada, Australia, New Zealand, and Russia. Provides a support system for those suffering chronic pain. · U.S. Medic Alert: Medic Alert, P.O. Box 381009, Turlock, CA 95381-9009,1-800-432-5378 Canadian Medic Alert: Medic Alert, P.O. Box 0988 Don Mills, Ontario, Canada M3C2T9 1-800-668-1507 Tax deductible. Chains, bracelets in a variety of styles. $35.00 Includes important info for medics. 1-800 # is engraved, and when called, any info you supplied to Medic Alert is given to medic/nurse/dr. Wallet size card with dr. name, # and emergency contact, etc. included · Thyroid Foundation of America, Inc., ACC 630, Massachusetts General Hospital, Boston, MA 02114 (617)726-8500 Provides health education and support for thyroid patients and health care professionals. · The Well Spouse Foundation, P.O. Box 28876, San Diego, CA 92198 (619)673-9043 (914)357-8513 Support groups; gives emotional support to spouses of the chronically ill; raises consciousness of professionals to the plight of the well spouse; advocates for legislative changes in insurance coverage for respite care and long-term care; produces a bi-monthly newsletter, WSF Newsletter. · Agency for Health Care Administration, HMO/Managed Care Hotline, Toll Free: 1-800-226-1062 The HMO/Managed Care Hotline is a toll free telephone line maintained by the Agency for Health Care Administration to quickly respond to emergency or urgent quality of health care complaints and concerns by members of HMO’s and managed care organizations. The Hotline is available between 8 a.m. and 5 p.m., Monday through Friday and is answered by experienced, registered nurses who work with members to resolve problems. · A good source of patient contacts is narcotics anonymous groups or drug-abuse recovery groups. Many people in these groups have hep C and they meet regularly and pass information around a lot.
SUPPORT GROUPS: ALABAMA (BIRMINGHAM): American Liver Foundation support group. Meets the second Thursday of every month at 6:30, ALF Office Conference Room, 4 Office Park Circle, Suite 304, Birmingham Alabama. For more information, contact Virginia Greene, (205)879-0354 ALASKA (KENAI PENNINSULA): Hepatitis C support group is now forming. For information, contact Cheri Murphy in Soldotna at: (907)262-9197 or email: kcmurph@ptialaska.net CALIFORNIA (BAKERSFIELD): Kern Hepatitis Association support groups meet weekly in various Bakersfield locations. For schedule and more information, call 661-323-5000 or 661-834-3196. CALIFORNIA (BURBANK, LOS ANGELES COUNTY): Hepatitis C Support group meets monthly at Providence St. Joseph Medical Center. For schedule and more information, call 919-767-4162. CALIFORNIA (LONG BEACH): Let's Talk support group meets at the VA Medical Center, 5901 E. 7th St., Long Beach in the H5 Conference Center. For schedule and more information, call Back to Life at 949-654-4250. CALIFORNIA (LOS ANGELES): American Liver Foundation support groups meet monthly. For locations, schedule and more information, call the American Liver Foundation, Greater Los Angeles Chapter at 310-670-4624 CALIFORNIA (MARIN COUNTY): Marin County Liver Disease and Transplant Support Group for liver disease and transplant patients and their family/support people/caregivers, meets the first Thursday of each month, 7:00 PM to 8:30 PM at the Tamalpais Creek Retirement Center, Activities Room, 853 Tamalpais Avenue, Novato. Take the DeLong exit off 101 and head west. Make a right on Novato Blvd. and a left at the first light (Tamalpais Avenue). Plenty of free parking, and handicapped-accessible. Refreshments. For more information, call 415-485-8829. CALIFORNIA (MORENO VALLEY): American Liver Foundation support group, Inland Empire Chapter, 21439 Blossom Hill Lane, Moreno Valley, CA 92557 For more information, contact Russell D. Hamilton, Sr, (909) 778-1807 CALIFORNIA (OJAI): Hepatitis C Support group meets the 4th Tuesday of each month at the Little House. For schedule and more information, call Back to Life at 805-692-2860 CALIFORNIA (ORANGE COUNTY): Back to Life support group meets at the UCI Medical Center, 101 City Drive, Orange in the Associates Conference Room. For schedule and more information, call 949-654-4250 or toll-free in California 1-888-85LIVER. CALIFORNIA (SAN DIEGO COUNTY): The American Liver Foundation Support Group at Scripps Green meets the first Wednesday of each month at 6:00 P.M. The first hour is a presentation by the Scripps medical team on various hepatitis/liver disease topics and the second hour is a support group. For more information, contact Phyllis at ALF (619) 291-5483. CALIFORNIA (SAN FRANCISCO): Hepatitis C Support Project. Contact Alan Franciscus, (415) 978-2400. The Hepatitis C Support Project is the home of the HCV Advocate, a great newsletter. Please visit their site at www.hcvadvocate.org or email them at sfhepcat@pacbell.net. CALIFORNIA (SAN FRANCISCO): HAAC: Hepatitis C Action & Advocacy Coalition. A group of independent committed heppers who haven’t copped out. If you want to change things and get involved with the politics of HCV, this is the place to call. (415) 863-5172. Email: haac_sf@hotmail.com. Contact: Brian Klein. CALIFORNIA (SAN FRANCISCO): American Liver Foundation support group, San Francisco Bay Area Chapter, P.O. Box 150421, San Rafael, CA 94915-0421. Contact Cres VanKeulen at (415) 258-1682 CALIFORNIA (SANTA BARBARA): Back to Life Santa Barbara support group meets monthly. For schedule and more information, call 805-692-2860. CALIFORNIA (SANTA CRUZ): Hepatitis support group meets the 3rd Monday of each month. For more information, contact Jerry Kelly at (408)438-7187. CALIFORNIA (SANTA MARIA): Hepatitis C Support groups meets the 1st Tuesday of each month in Santa Maria. For schedule and more information, call Back to Life at 805-692-2860. CALIFORNIA (VENTURA COUNTY): Living with Hepatitis support group meets monthly in Ventura. For schedule and more information, call 805-524-5438. CALIFORNIA (WALNUT CREEK): Meetings are held on the last Thursday of each month at 7pm in Aspen Room #2 (downstairs) at the John Muir Hospital, corner of Ygnacio Valley Road and La Casa Via. (Sorry, no contact name or phone number available.) CALIFORNIA (YUBA CITY): Hepatitis C Support group meeting the 3rd Monday of each month at the Glad Tidings Church. For schedule and more information, call 530-671-5644. COLORADO: (Colorado Springs): Health Learning Center, 1644 Medical Center Point, 3rd Thursday, 7-8:30pm; (719)528-5575 Jane; (719)598-3771 Sharon; or Lance at william@divide.net. COLORADO: (Denver): HepC Connection. For more information, contact: Ann Jesse at 1-800-522-HEPC or (303) 393-9395, address: 1714 Poplar St., Denver, CO 80220. COLORADO: (Wheat Ridge): American Liver Foundation support group, Rocky Mountain Chapter, P.O. Box 117, Wheat Ridge, CO 80034. For more information, contact Lee Gerstner at (303) 940-3664 CONNECTICUT: American Liver Foundation support group, Connecticut Chapter, 1 Bradley Road, Suite 405, Box 4062, Woodbridge, CT 06525. For more information, contact Norma Pisetsky at (203) 397-5433 FLORIDA (BROWARD COUNTY): For more information, contact: (561) 434-0092 FLORIDA (FT LAUDERDALE): Meetings are held on the 3rd Wednesday of every month at the Florida Medical Center, 5000 West Oakland Park Blvd, Fort Lauderdale, FL. For more information, contact: (954) 587-3777 FLORIDA (ORLANDO): Orlando Hepatitis Support System, 5624 Deepdale Drive, Orlando, FL 32821 (407) 238-9422 or (407) 238-2368 or email: peaches@magicnet.net FLORIDA (ST PETERSBURG): Tampa Bay Hepatitis and Liver Disease Support Group, Inc. St. Petersbug Meetings are held the second Tuesday of each month, 7:00-9:00 p.m. (please be prompt) at the Columbia Edward White Hospital, Auditorium - Suite 1G, 2299 9th Avenue, North St. Petersburg, FL. For more information, contact: Don Vausio - (813)577-0836 or Peggy Tatka - (813)684-4678 FLORIDA (TAMPA): Tampa Bay Hepatitis and Liver Disease Support Group, Inc., Tampa Meetings are held the fourth Thursday of each month, 7:00 - 9:00 p.m. (please be prompt) at the University Community Hospital, Hospitality Room (past the Cafeteria), Bruce B. Downs & Fletcher, Tampa, FL For more information, contact: Don Vausio - (813)577-0836 or Peggy Tatka - (813)684-4678 FLORIDA (TAMPA): The Liver Disease Support Group holds meetings on the first Monday of each month at “The Health Source” at University Square Mall, 2140 Fowler Ave. Tampa FL 33613. For more information contact: M.J. Fitzsimmons (813) 899-9255 or email: mjfitz@IntNet.net GEORGIA (ATLANTA): American Liver Foundation support group, Atlanta Chapter,4250 Wieuca Overlook, NE Atlanta, GA 30342. For more information, contact Helen Gitlin at (404) 255-1648 HAWAII: There is a Hepatitis Support Group on the last Thursday of every month at Wilcox Hospital, Conference Room A, in Lihue, Kauai, Hawaii. It is from 6:30 p.m. till 8 p.m. Interested may call: Teresa at (808) 826-7825. IDAHO (BOISE): Southwest Idaho Hepatitis Support Group, 3rd Tues/mo, 7pm, St. Alphonsus Medical Center, 1055 N. Curtis Rd. Chickee Helms @ 208-382-6400. ILLINOIS (CHICAGO): American Liver Foundation support group, Illinois Chapter, 225 W. Washington Street, Suite 2249, Chicago, IL 60606. For more information, contact Paul Ladniak at (312) 419-7086 IOWA: Hepatitis C Foundation sponsored support group. For information contact (800)324-7305. IOWA (CEDAR RAPIDS): Hepatitis Education Project sponsored support group. Call 1-800-218-6932 for more information. IOWA (DAVENPORT): American Liver Foundation support group, Quad Cities Chapter, 4328 Ridgewood Court, Davenport, IA 52807. For more information, contact Patti Erpelding at (319) 359-1994 KANSAS (KANSAS CITY): A meeting is held the second Wednesday of each month at KU Medical Center, Prairie Room, which is nearby Delp cafeteria. Parking is available in the parking garage across the street from the main hospital entrance on Cambridge, 2 blocks west of State Line Road at 39th street. Ask at the info desk for directions to the Delp cafeteria. Phone (913)677-6561. KANSAS (WICHITA): Hepatitis C Foundation support group meets the 3rd Thursday of each month at 7:00pm. For more information, call (800)324-7305 Maryland (Frederick) Living With Hepatitis Support Group, Frederick County Health Department, 350 Montevue Lane, entrance C, 7-8:30pm. Tel 301-694-0245. Geraldine Frank, Facilitator, tfrice@erols.com. Meets 4th Thur./ month (except for June, July, Aug. Nov. & Dec.)
MASSACHUSETTS (BEVERLY): Beginning on Monday February 17, 1997 and continuing every 3rd Monday of each month, Beverly Hospital will offer support group meetings for all individuals affected by Hepatitis C. This group welcomes all people with Hepatitis C as well as spouses, older children, friends and anyone with a concern about this disease. For more information, contact: Hepatitis C Seminar & Support Group, 85 Herrick St. Beverly, Massachusetts (508) 922-3000 extension 2240. MASSACHUSETTS (NEWTON): American Liver Foundation support group, New England Chapter, 246 Walnut Street, Suite 401, Newton, MA 02160. For more information, contact Judi Kaplan Elkin at (617) 527-5600. MASSACHUSETTS (WORCESTER): Hepatitis support group, meets the first Monday of each month from 6:30- 8:00 @ U-Mass Hospital Worcester, MA in Lecture Hall B. MICHIGAN (WEST MICHIGAN): Hepatitis C Foundation sponsored support group. For information contact Mary Kolanowski (616)336-9351 or (800)324-7305. MINNESOTA (Minneapolis/St. Paul): Liverhope Support Group. Meetings are the 2nd and 4th Tuesday each month 7-9 PM Shepard of the Hills Lutheran Church 3920 North Victoria Street Shoreview, Minnesota 1/2 mile north of I-694 on the Victoria St. exit. LiverHope too Education Group Education for the newly diagnosed. Meetings are the 3rd Sunday each month 7-9 PM 901 Meadowwood Drive Brooklyn Park, Minnesota. http://www.liverhope.com/, Voice mail: (763) 780-0108 Pat Buchanan (763) 566-3839 pat@liverhope.com Helen Clark (952) 933-0932 helen@liverhope.com MINNESOTA (ROCHESTER): American Liver Foundation support group, Rochester & Southeastern Minnesota Chapter, 615 Eighth Avenue, SW, Rochester, MN 55902. For more information, contact Sylvia Aronson at (507) 289-0914. MISSOURI (ST. LOUIS): Hepatitis C Support Organization meets the second Monday of each month at the Clayton Library, corner of Central and Maryland, from 7-8:45 p.m. Contact person is Nancy Marsh, 2665 Midland Ridge Drive, St. Louis, MO 63114. (314) 428-7973. MONTANA (BOZEMAN): Connections, 821 W. Mendenhall St., Bozeman, MT 59715. Contact Casey Rudd, 406-556-1139, caseyconnections@msn.com
MONTANA (HELENA) American Liver Foundation,Pacific Northwest Chapter, Contact 406-459-2417 MONTANA (Kalispell) : Hep C Montana, Flathead Valley United Church of Christ, 204 7th Avenue West Contact: 406-257-3825
NEBRASKA (OMAHA): Hepatitis C Foundation sponsored support group. For information contact Kay Helms (402)398-1487 or (800)324-7305. NEW HAMPSHIRE : Hepatitis C Foundation sponsored support group. For information contact Roberta Glenn (603)652-4326, Ed Nash (603)742-4732 or (800)324-7305. NEW JERSEY (CENTRAL JERSEY): Hepatitis C Foundation sponsored support group. For information contact, Valerie Mead (908)247-2628, Barb Verb (908)937-8820 or (800)324-7305. NEW JERSEY (NORTH JERSEY): Hepatitis C Foundation sponsored support group. For information contact John Sorrentino (201)743-2380 or (800)324-7305. NEW JERSEY (SOUTH JERSEY): Hepatitis C Foundation sponsored support group. For information, contact Libby Leidolf (609)935-0807 or (800)324-7305. NEW JERSEY (Summit): Union County, NJ, Support Group Meets last Friday of every month (7:30PM) Overlook Hospital, Conference Rm #2 Summit, NJ contact: susie@hepcesn.net. Also: Hepatitis C Education & Support Network, Inc. Focus on educating the public, promoting awareness and supporting people with HCV Toll-free Support Line (1-888-437-2376) hepcesn@hepcesn.net NEW MEXICO (ALBUQUERQUE): Hepatitis C support group meets the 4th Saturday of each month at the Lovelace HR Center at 1258 Ortiz SE, Albuquerque, NM from 9am to 11am. For more information, contact Janet Brown at (505)292-4338. NEW YORK (LONG ISLAND): The Hep C Courage Group holds meeting in Manhasset. For more information, contact Judy or Gina at (718)595-2805. NEW YORK (MELVILLE): American Liver Foundation support group, Greater New York Chapter, 200 Broadhollow Road, Suite 207, Melville, NY 11747. For more information, contact Mary Beth Tully at (516) 393-5076. NEW YORK (ROCHESTER): Hepatitis C Foundation Support Group, 16 Sanders Farm Dr., Penfield, New York 14526 Contact: John Trowbridge at (716) 377-9330 or (800)324-7305. NEW YORK (ROCHESTER): American Liver Foundation support group, Western New York Chapter, 75 Buckland Avenue, Rochester, NY 14618. For more information, contact Nancy Koris at (716) 271-2859. NORTH CAROLINA (CHAPEL HILL): American Liver Foundation support group, Triangle Area Chapter, UNC Department of Medicine, Div. of Digestive Diseases & Nutrition, University of North Carolina at Chapel Hill, CB #7080, 423 Burnett-Womack Bldg., Chapel Hill, NC 27599-7080. For more information, contact Robert S. Brown Jr., MD, MPH at (919) 966-2516. OHIO (CLEVELAND): American Liver Foundation support group, Northern Ohio Chapter, 9500 Euclid Avenue, Ab2, Cleveland, OH 44195. For more information, contact Sharon Mendelsohn at (216) 444-8409. OHIO (COLUMBUS): The HEPCAT support group meets every other Thursday at the OSU Medical Center. For more information contact: Emma Birch 614-337-1450 email: EBirch@aol.com. OHIO (TOLEDO): American Liver Foundation support group, Toledo Chapter, 419 Saint Clair St., N., Apt. 303, Toledo, OH 43604. For more information, contact Richard Gee at (419) 243-5777. OREGON (COOS BAY): Hepatitis Education Project sponsored support group. Call 1-800-218-6932 for more information. OREGON (MEDFORD): American Liver Foundation support group, Southern Oregon Chapter, 2578 Table Rock Road, #15, Medford, OR 97501. For more information, contact Barbara Bransford at (541)857-9245. PENNSYLVANIA (LANCASTER): Hepatitis C Foundation sponsored support group. For information, contact Jean Collin (717) 394-7110 or (800)324-7305. PENNSYLVANIA (LEIGH VALLEY): Hepatitis C Foundation sponsored support group. For information, contact Dianne Slagle (610)432-2481 or (800)324-7305. PENNSYLVANIA (PLYMOUTH MEETING): American Liver Foundation support group, Delaware Valley Chapter, 600 West Germantown Pike, Suite 400, Plymouth Meeting, PA 19462-1046. For more information, contact Deborah Katz at (610)260-1497. TENNESSEE (MEMPHIS): Hepatitis Support Group meets the third Wednesday of every month at 6:00, Lobby Conference Room, St. Francis Hospital, 5959 Park Avenue. For more information, contact UT: (901)448-05813, Shirley: (901)853:4606, or Ann: (901)755-0403 TENNESSEE (NASHVILLE): The Nashville Hep Support group is currently forming. For more information, contact Jim Nevels at (502)886-2754 or email: vgnevels@hop-uky.campus.mci.net. TENNESSEE (NASHVILLE): Hepatitis C Foundation sponsored support group. For information contact Mary Harrington (615)385-3718 or (800)324-7305. TEXAS: Texas Liver Coalition, Phone: 1-800-72-LIVER. TEXAS (WACO): LifeMatch Group. For more information, call: (254)840-9620. VIRGINIA (NORFOLK): Hepatitis support group sponsored by Schering-Plough meets at Leigh Memorial Hospital, in the private dining room on the 2nd Thursday of each month. For more information, contact Dianna Pullium (757) 552-8587. WASHINGTON STATE (PASCO): Hepatitis Support Group. Our Lady of Lourdes Hospital, Pasco, WA held in the Carondelet Room right next to the cafeteria Second Wednesday of every month - 6:30 to 7:30. Contact Person: Cindy Purdin - 509/545-6338. thebreezeone@earthlink.net. WASHINGTON STATE (KENNEWICK): Hepatitis C support group meets on the third Monday of every month at Kadlec Medical Center, the Columbia Room, Richland WA at 6:30 pm. For more information, contact Joyce at (509)627-8053 or Julie at (509)627-0786. WASHINGTON STATE: (SEATTLE) Washington State, Hepatitis Education Project. Resource Center located at 4603 Aurora Avenue North, Seattle, WA 98103-6513. Local phone number for Seattle area: 206-732-0311, toll free 1-800-218-6932. Sponsors 20 support groups across the state of Washington, call Resource Center for locations. Web site: http://www.scn.org/health/hepatitis, email hep@scn.org. WASHINGTON STATE: (VANCOUVER). Parents of Kids with Infectious Diseases (PKIDs), P.O. Box 5666, Vancouver, WA 98668 Provides service to parents and families all over the US, and some other countries. For more information, contact Trish Parnell at (360)695-0293 voice (360)695-6941 fax or email pkids@pkids.org. A Web site is also available at: http://www.pkids.org/ WASHINGTON STATE (YAKIMA): Hepatitis C Support group meets 4th Monday of each month at 7:00 pm at Wellness House, 210 S. 11th Ave. Suite 40, Yakima, WA 98942. For more information call Ellie at 509-452-5456 or Wellness House at 509-575-6686. WEST VIRGINIA: Hepatitis C Foundation sponsored support group. For information contact Dana Mack (304)273-2450. WISCONSIN (MILWAUKEE): American Liver Foundation support group, Wisconsin Chapter, 710 W. Oregon Street, #7, Milwaukee, WI 53204. For more information, contact Deborah Larkins at (414) 257-7477. --- HepCBC Phone: (250) 595-3892 Fax: (250) 414-5102 Email: info@hepcbc.ca Website: http://www.hepcbc.ca/
HepCBC is an umbrella organization comprising a variety of autonomous organisations, each of which is dedicated to educating and advocating for those infected and affected by HCV. Currently these are: ANKORS (Nelson), ARC (Kelowna), Positive Living North West (Smithers), Coast Garibaldi Health (Sunshine Coast), Comox Valley Community Health, Northern Interior Health (Prince George), HepTalk (Chiliwack), Victoria Persons with AIDS, Trail Support Group, Princeton Support Group, HepCure (Armstrong), Mission Support Group, Hepatitis C Foundation of Quebec, HepSEE (Winnipeg), and Action Addiction Services (Sechelt). HepCBC provides information, education and support to people infected with Hep C as well as to the organizations caring for them. HepCBC is the home of the hepc.bull, and the HepCAN list. HepCBC also distributes and updates the FAQ and other materials. HepCBC maintains the most comprehensive community co-infection library on Vancouver Island, and one of the best in the province of British Columbia. Full text access to major medical journals and other services are available to member organizations. Atlantic Hepatitis C Coalition 902-443-5140 Halifax 902-857-9093 Hubbards, NS 902-542-4431 Kentville, NS Email: r.ahcc@ns.sympatico.ca Website: www.ahcc.ca Canadian hepatitis c coalition P.O. Box 21058 Penticton, B.C. V2A 8K8 Phone: (604) 490-9054 Fax: (604) 490-0620 email: bchepc@telus.net
Founded in March 1996 to assist newly diagnosed and their families and friends to understand and live with Hepatitis C. Designed the red and yellow awareness ribbon and supply ribbons internationally.
The children's liver alliance canada inc P.O. Box 21058 Penticton, B.C. V2A 8K8 (250) 490-9054 (250)490-0620 Fax email: bchepc@telus.net, http://www.livertx.org/ Hepatitis c counsel group (This group is coordinating the class action lawsuit for Hepatitis C infections from tainted blood, which has been launched against the Canadian Red Cross Society, the Canadian federal government and the provincial governments other than British Columbia and Quebec) Contact the Hepatitis C Class Action Line at 1-800-229-LEAD Canadian hepatitis information line: 1-800-363-3422 Press Code 2121 for information. Press 0 to speak with an information nurse. HepCAN The online support group for Canadians and everyone else. Check us out on the Web at http://groups.yahoo.com/group/hepcan/messages or contact: citizenk@nethop.net. To subscribe send an email message to hepcan-subscribe@yahoogroups.com Hepc.bull hepc.bull is a monthly Canadian newsletter about Hepatitis C. The newsletter provides support information primarily in BC but also from across Canada and contains articles on many different aspects of the disease. To subscribe, send a message to jking@hepcbc.ca
BRITISH COLUMBIA
Armstrong HepCure Office and library, by appointment. Contact: Marjorie 546-2953, amberose@sunwave.net, www.hepcure.ca
Campbell River/ Comox Valley Hep C Support and information, call 830-0787 or 1-877-650-8787 P.O. Box 52, Port Hardy, Dan Webb (250) 902-2238 or 1-866-902-2238 niacph@hotmail.com
Castlegar Contact: Robin 365-6137
Cowichan Valley Hepatitis C Support Contact Leah 748-3432.
Cranbrook HeCSC-EK Support Group Monthly meetings- Call for details. Katerina (250) 417-2010, hecsc-ek@shaw.ca or Leslie (250) 426-6078, ldlong@shaw.ca
Kamloops Hepatitis C Self-Help Support Group: 1st & 3rd Thurs. monthly. 1 p.m. AIDS Society, 437 Lansdowne St. Call (250) 372-7585 or Susan (250) 554-7055, ask@telus.net
Kelowna Hepkop: Last Sat. monthly, 1-3 PM, Rose Ave. Meeting Room, Kelowna General Hospital. Contact Elaine Riseley (250) 768-3573, eriseley@shaw.ca or Lisa Mortell 766-5132 lmortell@silk.net or toll-free 1-866-766-5132.
Kootenay Boundary: For individual support & info contact Brian Reinhard (250) 364-1112 reiny57@yahoo.ca
Mid Island Hepatitis C Society Friendship and support group, 2nd Thurs. monthly, 7 PM, Central Vancouver Island Health Centre 1665 Grant St. Nanaimo. Contact Sue for info 245-7635, mihepc@shaw.ca
Mission Hepatitis C and Liver Disease Support Group 3rd Wed. monthly, 7 PM, Springs Restaurant, 7160 Oliver St. Contact Gina 826-6582 or Patrick 820-5576, missionsupport@eudoramail.com
Nakusp Support Group Meetings: 3rd Tues. monthly, 7 PM, Nakusp Hospital Boardroom. Contact Vivian 265-0073
Nelson Hepatitis C Support Group 1st Thurs. monthly. ANKORS Offices, 101 Baker St. Contact Alex Sherstobitoff, 1-800-421-2437, 505-5506, info@ankors.bc.ca http://www.ankors.bc.ca/
Boundary Hep C Support. Contact Ken 250-442-1280
New Westminster Support Group 2nd Mon. monthly, 7-8:30 PM, First Nations Urban Community Society, 623 Agnes Street, New Westminster. Contact Dianne Morrissettie 604-517-6120 dmorrissettie@excite.com
Parksville Support Group Contact Ria, 248-6072
Parksville/Qualicum 102a-156 Morison Avenue, PO Box 157, Parksville, BC V9P 2G4. Open daily 9 to 4, M-F. Contact 248-5551, sasg@island.net
Penticton Hep C Family Support Group Contact Leslie 490-9054, bchepc@telus.net
Powell River Hep C Support Group Next meeting: Contact the Health Unit 485-8850 . Prince George Hep C Support Group 2nd Tues. monthly, 7-9 PM, Prince George Regional Hospital, room 1356 (former Chapel) Contact Gina 963-9756, gina1444@yahoo.ca or Ilse 565-7387 ikuepper@northernhealth.ca
Prince Rupert Hepatitis C Support Contact Ted Rogers (250) 624-7480, Ted.Rogers@northernhealth.ca
Princeton 2nd Sat. monthly, 2 PM, Health Unit, 47 Harold St. Contact Brad 295-6510, kane@nethop.net
Queen Charlotte Islands/Haida Gwaii: Phone support. Contact Wendy 557-2487, wmm@island.net, www.island.net/~wmm/
Richmond: Lulu Island AIDS/Hepatitis Network: Meetings/drop-in dinner each Mon. 7-9 PM. Contact Phil or Joe 276-9273.
Slocan Valley Support Group Contact: Ken 355-2732, keen@netidea.com
Smithers: Positive Living North West 2nd Wed. monthly, 12 noon, 3862 Broadway (behind Panago). Contact Deb 877-0042 or Doreen 847-2132, deb@plnw.org
Sunshine Coast -Sechelt: 1st Wed. monthly, 6:30 pm at Sechelt Indian Band Health Unit. Contact 604-885-9404
Pender Harbour 3rd Thurs. monthly, 6:30 pm at Pender Harbour Paper Mill. Contact Myrtle 604-883-0010 or Bill, pager 604-740-9042
Vancouver: Healing Our Spirit-Offering HCV and HIV education, support to Aboriginal People in BC. 100 - 2425 Quebec St. Contact 1-800 336-9726, info@healingourspirit.org
VANDU Vancouver Area Network of Drug Users Each Mon., 2 PM, 412 East Cordova Bus fare & snack. Contact Cristy or Ann 604-719-5313, or 604-216-2776 (ask for VANDU). Space limited. vandu@vandu.org www.vandu.org
Vancouver: Pre/post liver transplant support Contact Gordon Kerr: sd.gk@shaw.ca
YouthCO AIDS Society HepCATS Education & HCV info to youth #205-1104 Hornby St., Vancouver. Contact for info, Caitlin Padgett caitlinp@youthco.org Support, contact Matt Lovick 604-688-1441 or 1-877-YOUTHCO www.youthco.org
Vernon HeCSC HEPLIFE 2nd & 4th Wed. monthly, 10 AM-1 PM, The People Place, 3402-27th Ave.. Contact Sharon 542-3092, sggrant@telus.net
Victoria Support and Information Info about support groups & other services. Contact the Needle Exchange 384-2366, hermione.jefferis@avi.org
Yukon Hep C Support Group PO Box 31216, Whitehorse, YK. Contact Brian: 867-668-4483
QUEBEC
HeCSC Quebec City Region 1st Wed monthly, 7 PM, 876 rue D'Alençon, St. Nicolas, QC. Contact Renée Daurio (418) 836-2467 reneedaurio@hotmail.com
ATLANTIC PROVINCES:
Fredericton, NB Contact: Bob, 453-1340
Saint John & Area: Information and Support. Contact Allan Kerr: kerrs@nbnet.nb.ca
Moncton. N.B. Contact Debi, email support only: hepcmonc@rogers.com
Cape Breton Island, N.S. The Hepatitis Outreach Society Support Group 2nd Tues. monthly 150 Bentick Street, Sydney, N.S. 7:00 - 9:00 PM. Call Cindy Coles 1-800-521-0572, (902) 733-2214 Fax (902) 733- 2043 hoscb@ns.sympatico.ca
ONTARIO:
Barrie Hepatitis Support, HepSEE Chapter Contact Jeanie for information/appointment 705-735-8153 hepseebarrie@rogers.com
Durham Hepatitis C Support Group 2nd Thurs. monthly, 7 PM, St. Mark's United Church, 201 Centre St. South, Whitby. Contact Smilin' Sandi: smking@rogers.com "Sandi's Crusade Against Hepatitis C" http://creativeintensity.com/smking/ 905-723-8521 or 1-800-841-2729
Canadian Hepatitis C Network http://www.canhepc.net/
Kingston Hep C Support Group 1st Wed. monthly, 5:30 PM, - 9 p.m. St. George's Cathedral, King and Johnson St. (Wellington St. entrance) Contact: HIV/AIDS Regional Service 613-545-3698 UNDUN Message board: http://www.freewebs.com/undun/index.htm
Kitchener Area Chapter 3rd Wed. monthly, 7:30 PM, Cape Breton Club, 124 Sydney St. S., Kitchener. Contact: Carolyn (519) 880-8596 lollipop@golden.net
Niagara Falls Hep C Support Group Last Thurs. monthly, 7 PM, Niagara Regional Municipal Environmental Bldg., 2201 St. David's Road, Thorold. Contact Rhonda (905) 295-4260, hepcnf@becon.org
AIDS Committee of North Bay Bi-weekly HCV support meetings Contact Karyn (705) 497-3560
Peel Region Hep C Support Group www.peel-hepc.com Contact (905) 799-7700 healthlinepeel@region.peel.on.ca
St. Catharines Contact Joe (905) 682-6194 jcolangelo3@cogeco.ca
Trenton ON support. Contact Eileen Carlton 394-2924 carfam@quintenet.com
Hepatitis C Network of Windsor & Essex County Contact Andrea 250-5399 or Michelle 256-1878, hepcnetwork@mailcan.com http://home.cogeco.ca/~hepcnet/
York Chapter HeCSC 3rd Wed. monthly, 7:30 PM, York Region Health Services, 4261 Hwy 7 East, B6-9, Unionville. Contact (905) 940-1333, 1-800-461-2135. info@hepcyorkregion.org www.hepcyorkregion.org
PRAIRIE PROVINCES:
HeCSC Edmonton Contact Jackie Neufeld 939-3379.
HepC Edmonton Contact Fox 473-7600, or cell 690-4076, fox@kihewcarvings.com
Fort McMurray, Alberta Hepatitis C Support Network 1st Wed. monthly 12:00- 2:00 p.m. Lunch included. #205, 10012A Franklin Ave. |