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A Guide to the Clinical Care of Women with HIV/AIDS, 2005 edition |
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Chapter
XV
Resources
Judith Ellis, MS, and
Helen Schietinger, MA, ACRN
How To Use This Chapter
TOP
A chapter devoted to additional resources is an essential part of this guide. First, HIV clinical care evolves so rapidly that some information in the guide will soon be out of date. Second, a wealth of information is available that supplements these chapters in specialized areas of care. It is our intention to include some of the most important resources for clinical care of women with HIV, but the list is by no means exhaustive. Readers can explore the links provided on websites to find other informative sites.
In this electronic information age, the term resources includes internet sites and electronic documents as well as organizations and published documents, so the chapter includes a range of mechanisms for obtaining more information. However, the web-based resources are considered primary because they are available from anywhere in the world and are usually updated on a periodic basis. Phone contact information is provided where available, so that those without access to the internet can still obtain information.
The resources are listed alphabetically in a grid that identifies major topics addressed by each resource as well as the type of information available. There is a brief description of the resource and website and phone contact information. The phone numbers with 800, 888, and 866 prefixes are only toll-free in the U.S.
Regarding special populations, the purpose of the resources chapter is to supplement the guide itself. We refer the reader to Chapter VIII, Addressing Cultural Issues to Improve Quality of Care, to discover tools to enhance the cultural competency of service providers and service agencies. In addition, many of the resources contain some information, such as fact sheets, about or for groups of people with special needs, such as people who are homeless, incarcerated, or transgendered. Special populations are usually only one aspect of a resource; there are not many resources specifically concerning racial/ethnic minorities or other special populations. The search function on many websites is a useful tool for locating information on specific topics or special populations. For example, providers caring for lesbians with HIV can find relevant information on their needs by searching The Body and the American Psychological Association Office on AIDS websites. |
Resources With Topic Areas
TOP
Type of User
A: Health Care Provider
B: Consumer
Type of information
1: Website
2: Guidelines
3: Printed Material
4: Phone/Email/Chat/Consultation
5: Meetings/Conferences
6: Consumer Education
* Must be member to access some information
Note: Websites were accessed 3/04.
| Provider and Consumer Resources |
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Adult AIDS Clinical Trials Group* (AACTG)
Website for the NIH-funded AIDS Clinical Trials Groups. See Pediatric AIDS Clinical Trial Group for clinical trials in pregnant women.
Contact: http://aactg.s-3.com |
A |
1 |
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AIDS Alliance for Children, Youth & Families
National association providing advocacy, education and support for children and families affected by HIV/AIDS. (formerly the AIDS Policy Center for Children, Youth & Families)
Contact: http://www.aids-alliance.org
1-202-785-3564, 1-888-917-AIDS (2437) |
A B |
1, 3, 4, 6 |
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AIDS Education Global Information System (AEGIS)
Website with HIV information and resources from the mainstream press, professional journals, and legal and legislative sources
Contact http://www.aegis.com |
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1, 5 |
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AIDS Education and Training Centers (AETC)
Regional centers that provide HIV training and education, including preceptorships, for health care providers; national and international centers that provide technical assistance in evaluation and specific areas of clinical care, such as hepatitis and palliative care; the resource center that provides resource materials on a wide range of HIV-related topics and links to the other centers.
Contact: http://www.aidsetc.org |
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1, 3, 4, 5 |
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AIDSInfo*
Website of U.S. Public Health Service treatment guidelines, continually updated (living documents), clinical trials, and drug and vaccine information. (The AIDS Clinical Trials Information Services and AIDS Treatment Information Services have been integrated into AIDSInfo.)
Contact: http://www.aidsinfo.nih.gov
1-800-HIV-0440, outside US 1-301-519-0459, TTY 1-888-480-3739 (Spanish speakers; Monday through Friday, 12 to 5 pm Eastern Time) |
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1, 2, 3, 5 |
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AIDS Info NYC
Website with information from community-based organizations in New York City for people living with HIV and AIDS.
Contact: http://www.aidsinfonyc.org |
B |
1, 3, 6 |
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AIDSMeds.com
Website for consumers that provides HIV treatment information and tools for understanding and tracking HIV treatment.
Contact: https://www.aidsmeds.com |
B |
1, 3, 4, 6 |
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AIDS Treatment Data Network (ATDN)
Organization with information about HIV treatment for consumers. Provides adherence and case management services in New York City, tracks Medicaid and the AIDS Drug Assistance Program (ADAP) nationwide (provides information to help individuals access drugs), and provides treatment information on the web.
Contact: http://www.atdn.org
1-212-260-8868, 1-800-734-7104 |
B |
1, 3, 5, 6 |
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American Academy of HIV Medicine (AAHIVM)*
Professional association for HIV specialists that promotes excellence in HIV/AIDS care and offers HIV credentialing for physicians, nurse practitioners, and physicians assistants.
Contact: http://www.aahivm.org/new/index.html |
A |
1, 3, 5 |
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American College of Obstetricians and Gynecologists (ACOG)*
Professional association for specialists in obstetrics and gynecology that provides guidelines and information in reproductive care of women.
Contact: http://www.acog.org |
A |
1, 2, 3, 5, 6 |
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American Foundation for AIDS Research
Organization with focus on basic and clinical research, clinical trials information, public and professional education, public policy, prevention science, and global initiatives.
Contact: http://www.amfar.org |
A B |
1, 3, 4, 6 |
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American Psychological Association Office on AIDS
Organization that provides information, training, and technical assistance on HIV/AIDS-related topics associated with coping, mental health services, prevention, community collaboration, and ethics.
Contact: http://www.apa.org/pi/aids |
A B |
3, 6 |
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Association of Nurses in AIDS Care (ANAC)*
Professional association that provides information and advises members about clinical and policy issues related to nursing and HIV care and offers HIV credentialing for RNs (ACRN).
Contact: http://www.anacnet.org
1-800-260-6780 |
A |
1, 3, 5 |
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The Body
Website with comprehensive HIV information and resources for consumers.
Contact: http://www.thebody.com |
B |
1, 4, 5, 6 |
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The Body Pro*
Website with medical treatment information, comprehensive care and prevention information, interactive Q & A, and access to written information.
Contact: http://www.thebodypro.com |
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1, 2, 4, 5 |
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Canadian AIDS Treatment Information Exchange (CATIE)
Canadian website with comprehensive HIV information and resources for consumers, including drugs, other medical treatments, and complementary therapies, in English and French.
Contact: http://www.catie.ca |
B |
1, 3, 4, 5, 6 |
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CDC Division of HIV/AIDS Prevention
Website of the Centers for Disease Control and Prevention with guidelines and information on prevention of HIV for providers.
Contact: http://www.cdc.gov/hiv/dhap.htm |
A |
1, 2 |
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CDC National Prevention Information Network (CDCNPIN)
Comprehensive reference, referral, and distribution service for information on HIV/AIDS, sexually transmitted diseases (STDs), and tuberculosis (TB), with information specialists who can assist in identifying appropriate resource materials.
Contact: http://www.cdcnpin.org
1-800-458-5231, TTY/TDD 1-800-243-7012 (Monday through Friday, 9 am to 6 pm Eastern time) |
A B |
1, 3, 4, 5, 6 |
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Critical Path AIDS Project
Website with information on treatment, prevention, policy, and advocacy as well as free internet and email services for consumers.
Contact: http://www.critpath.org |
A B |
1, 4, 5, 6 |
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Community Programs for Clinical Research on AIDS (CPCRA)*
Website of a network of research sites composed of community-based health care providers who offer their patients the opportunity to participate in research where they get their health care.
Contact: http://www.cpcra.org |
A |
1 |
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Gay Men’s Health Crisis Women and Family Services
Organization in New York City that provides information and services for people with HIV. Includes Women and Family Services Department and Lesbian AIDS Project.
Contact: http://www.gmhc.org |
B |
1, 3, 6 |
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Growth House
Website with comprehensive database on end-of-life issues, including death with dignity, hospice, palliative care, grief, bereavement, and related topics.
Contact: http://www.growthhouse.org |
A B |
1, 3, 5, 6 |
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Healthy Initiatives for Youth (HIFY)
Organization that provides information to youth about HIV prevention and training and technical assistance to professionals providing services to youth.
Contact: http://www.hify.com |
A B |
3 |
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HEPP Report (HIV and Hepatitis Education Prison Project)
Publication of the HIV and Hepatitis Education Prison Project (HEPP) that contains in its archives numerous articles about HIV in incarcerated women.
Contact: http://www.hivcorrections.org
1-401-277-3651 |
A |
1, 3 |
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HIVandHepatitis
Website of clinical information and resources on hepatitis and HIV.
Contact: http://www.hivandhepatitis.com |
A B |
1, 4, 5, 6 |
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HIVdent
Website with information on the dental manifestations of HIV and AIDS, including information for persons living with HIV/AIDS and their dental care providers.
Contact: http://www.hivdent.org |
A B |
1, 2, 5, 6 |
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HIVInSite: University of California at San Francisco
Website with detailed medical treatment information as well as prevention and policy information.
Contact http://hivinsite.ucsf.edu |
A |
1, 6 |
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HIV Medication Guide
Website with drug information and software to assess for potential drug interactions.
Contact: http://www.hivmedicationguide.com |
A B |
1, 6 |
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HIV Medicine Association (HIVMA)*
hProfessional association within the Infectious Diseases Society of America (IDSA) for HIV specialists that provides guidelines and information on HIV treatment and care.
Contact: http://www.hivma.org/HIV/toc.htm |
A |
1, 2, 3, 5 |
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HRSA HIV/AIDS Bureau
Website of the HIV/AIDS Bureau in the Health Resources and Services Administration (HRSA), the Federal agency that administers the Ryan White CARE Act funding. Information and publications supporting care of people with HIV, including Special Projects of National Significance (SPNS).
Contact: http://hab.hrsa.gov |
A B |
1, 3, 4 |
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HRSA Information Center
Clearinghouse of free publications on HIV, nutrition, maternal and child care, and numerous other health-related topics of concern to HIV providers.
Contact: http://www.ask.hrsa.gov
1-800-400-2742, 1-888-275-4772 |
A B |
1, 3 |
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International Association of Physicians in AIDS Care (IAPAC)*
Professional association for physicians that provides information and medical education, and advocates to expand access to health care services and life-saving drugs and technologies.
Contact: http://www.iapac.org
1-312-795-4930 |
A |
1, 3, 5, 6 |
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International Center for Research on Women (ICRW)
Organization that conducts research, capacity building, and advocacy on issues affecting women’s economic, health, and social status in low- and middle-income countries.
Contact: http://www.icrw.org
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A |
1, 3, 4, 5 |
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International HIV/AIDS Alliance
Organization that supports communities in developing countries to play a full and effective role in the global response to AIDS.
Contact: http://www.aidsalliance.org |
A |
1, 3 |
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Johns Hopkins University AIDS Service
Website with detailed medical treatment information as well as comprehensive care and prevention information, interactive Q & A, and access to written information.
Contact: http://www.hopkins-aids.edu
To order Medical Management of HIV Infection or write The Johns Hopkins University AIDS Service, PO Box 5252, Baltimore MD 21224. |
A |
1, 3, 6 |
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Kaiser Family Foundation
Organization that informs the U.S. HIV/AIDS policy discussion and funds global HIV prevention.
Contact: http://www.kff.org |
A |
1, 3 |
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Medscape
Website of medical information and education tools for medical specialists, primary care physicians, and other health professionals.
Contact: http://www.medscape.com |
A |
1, 5 |
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National AIDS Hotline
A website and phone hotline to answer consumer questions and provide referrals about HIV and AIDS. Confidential inquiries about prevention, risk, testing, treatment, and other HIV/AIDS-related concerns.
Contact: http://www.ashastd.org/nah
1-800-342-AIDS (1-800-342-2437), TTY 1-800-243-7889,
Spanish 1-800-344-7432 (24 hours a day) |
B |
1, 3, 4, 6 |
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National Association of People with AIDS (NAPWA)
Organization that advocates for and provides information and support to people living with HIV/AIDS.
Contact: http://www.napwa.org
1-202-898-0414 |
B |
1, 3, 5, 6 |
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National Association on HIV Over Fifty (NAHOF)
Organization that promotes the availability of a full range of educational, prevention, service, and health care programs for persons over age fifty affected by HIV.
Contact: http://www.hivoverfifty.org |
A B |
1, 3, 5 |
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National Clearinghouse for Alcohol & Drug Information (NCADI)
Website of Federal agencies that provides drug and alcohol information as well as descriptions of Federal prevention initiatives.
Contact: http://www.health.org |
A B |
1, 3, 6 |
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National Clearinghouse on Child Abuse/Neglect Information
Website for professionals and others seeking information on child abuse and neglect and child welfare; national child abuse hotline.
Contact: http://nccanch.acf.hhs.gov
Hotline: 1-800-422-4453 (24 hours a day) |
A B |
1, 3, 4, 5, 6 |
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National Clinicians’ Post-Exposure Prophylaxis Hotline (PEPline)
National toll-free hotline counsels health care workers with job-related exposure to HIV, hepatitis, and other blood-borne pathogens and offers treating clinicians up-to-the-minute advice on managing occupational exposures (i.e., needlesticks, splashes, etc.).
Contact: http://www.ucsf.edu/hivcntr/pepline
1-888-448-4911 (24 hours a day) |
A |
1, 4 |
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National Network to End Domestic Violence (Hotline)
Organization that provides national domestic violence hotline and local resources for women and advocates legally, legislatively, and educationally against domestic violence.
Contact: http://www.nnedv.org
1-800-799-SAFE (7233), TDD 1-800-787-3224 (24 hours a day) |
A B |
1, 3, 4 |
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National Library of Medicine (NLM)
Website that enables readers to conduct literature searches of the professional medical and HIV/AIDS-related literature including abstracts from relevant conferences.
Contact: http://www.nlm.nih.gov |
A |
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National Minority AIDS Council
Organization dedicated to developing leadership within communities of color to address the challenges of HIV/AIDS.
Contact: http://www.nmac.org
1-202-483-6622 |
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1, 3, 5, 6 |
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National Minority AIDS Education and Training Center
Center of the AIDS Education and Training Centers that builds capacity for HIV care and training among minority health care professionals and health care professionals serving communities of color.
Contact: http://www.nmaetc.org |
A |
1, 4 |
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New Mexico AIDS Infonet
Website with non-technical fact sheets on treatment for consumers.
Contact: http://www.aidsinfonet.org |
B |
1, 3, 6 |
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New York Online Access to Health
Website for consumers with a range of topics relevant to HIV/AIDS and women.
Contact http://www.noah-health.org |
B |
1 |
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NIAID Database for Anti-HIV Compounds
Website with computerized databases of chemical structures and biologic data on antiretroviral drugs.
Contact http://www.niaid.nih.gov/daids/dtpdb |
A |
1 |
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Partnership for Caring
Organization that provides resources, education, advocacy, and a hotline on palliative care and end-of-life issues such as living wills.
Contact: http://www.partnershipforcaring.org
1-202-296-8071, hotline 1-800-989-9455 (Monday through Friday,
9 to 5 pm Eastern time) |
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1, 2, 3, 4, 5, 6 |
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Pediatric AIDS Clinical Trials Group (PACTG)
Website for NIH-funded HIV clinical trials in children and pregnant women.
Contact: http://www.pactg.s-3.com |
A |
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Population Council
Organization that conducts research and develops policy on reproductive health and family planning, including HIV-related issues, internationally.
Contact: http://www.popcouncil.org |
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1, 2, 3 |
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Project Inform
Organization that provides consumers with treatment information and tools for living with HIV, including confidential treatment information by phone and Project Wise, a program focused on HIV/AIDS treatment information and advocacy for women.
Contact: http://www.projectinform.org
Treatment hotline 1-800-822-7422 (toll-free in the United States),
1-415-558-9051 (in the San Francisco Bay area or internationally), (Monday through Friday, 9 am to 5 pm; Saturday, 10 am to 4 pm Pacific time) |
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Reproductive Health Online (Reproline)
Website for JHPIEGO, affiliate of Johns Hopkins University, with information and training tools on reproductive health topics in low resource settings. Spanish, French, Portuguese, and Russian.
Contact: http://www.reproline.jhu.edu |
A |
1, 2, 3, 4, 5 |
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San Francisco AIDS Foundation
Organization that provides consumers with information about prevention, care, and experimental treatments.
Contact: http://www.sfaf.org |
B |
1, 3, 6 |
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Trevor Project Helpline
National 24-hour suicide prevention hotline for gay, lesbian, bisexual, transgender and questioning youth in crisis. The Trevor Project provides a training film for providers to promote tolerance for gay and questioning youth.
Contact: http://www.thetrevorproject.org
1-866-4 U Trevor, 1-866-450-8078. |
A B |
1, 4, 6 |
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UNAIDS: Joint UN Programme on AIDS
International program of the United Nations that provides technical assistance and global information to countries and communities to address HIV/AIDS.
Contact: http://www.unaids.org |
A |
1, 3, 5, 6 |
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Warmline: The National HIV Telephone Consultation Service
Telephone consultation service for health care professionals with questions on any topic related to HIV care.
Contact: http://www.ucsf.edu/hivcntr/warmeline/index.html
1-800-933-3413 (Monday through Friday, 6 am to 5 pm Pacific Time) |
A |
1, 4 |
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The Well Project
Web portal for women living with HIV with treatment information, discussion groups, organizational tools, slide sets, searchable clinical trials listings, and resource information.
Contact: http://www.thewellproject.com |
A B |
1, 3, 4, 5, 6 |
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WhatUDo
Organization targeting youth for HIV prevention (information, activities, chat rooms).
Contact: http://whatudo.org |
B |
1, 6 |
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Women Alive
Organization by and for women living with HIV, with local services in Los Angeles as well as internet services.
Contact: http://www.women-alive.org
1-800-554-4876, 1-323-965-1564 |
B |
3, 4, 6 |
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Women, Children, and HIV
Website with information for providers on prevention of perinatal HIV transmission and HIV preganancy and pediatric care, with a global focus, created by the National Pediatric Resource Center.
Contact: http://www.womenchildrenhiv.org |
A |
1, 2 |
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Women Organized to Respond to Life-threatening Disease (WORLD)
Organization in Oakland, CA for women with HIV that provides peer advocacy, treatment education training, and retreats.
Contact: http://www.womenhiv.org
1-510-986-0340 (Monday through Friday, 10 am to 6 pm Pacific Time) |
A B |
1, 3, 4, 5, 6 |
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World Health Organization HIV/AIDS Department
Website of the WHO HIV/AIDS Department, which provides technical support in HIV/AIDS treatment and prevention to countries and providers.
Contact: http://www.who.int/hiv/en |
A |
1, 2, 3, 5 |
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Type of User
A: Health Care Provider
B: Consumer
Type of information
1: Website
2: Guidelines
3: Printed Material
4: Phone/Email/Chat/Consultation
5: Meetings/Conferences
6: Consumer Education
* Must be member to access some information
Note: Websites were accessed 3/04.
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