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Additional
Resources for Patients
and Patient Advocates
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here for a detailed list of Health Associations. |
- Acurian (Provides
both investigators and patients with information on innovative drug
therapies and enables them to register their interest in participating
in the drug trial process)
- AHealthyMe.com
(Personalized health and wellness information as well as a database
of health articles and reference materials)
- Alliance
for Aging Research (Leading citizen advocacy organization for
improving the health and independence of Americans as they age)
- AOL
Web Channels: Health (Learn about illnesses, diseases, medications,
treatments, support groups, and more)
- Canada's
Research Based Pharmaceutical Companies (Provides consumer health
information, information related to the pharmaceutical industry and
a student resource center)
- Center for Disease
Control and Prevention (Promoting health and quality of life by
preventing and controlling disease, injury, and disability)
- Clinical Trials Notification
Services (If you've looked over the clinicalhome listings of clinical
trials and still haven't found an appropriate clinical trial, sign-up
to be notified when new clinical trials are listed)
- Discovery
Health Channel (Provide consumers with information on a range
of topics from cancer, pregnancy and kids' health, to diabetes, fitness,
asthma and sexual health.)
- England's Department
of Health (Aim to improve and to protect the health and well-being
of the people in England)
- Government
Clinical Trial Website (Provides patients, family members and
public with current information about clinical research studies)
- healthfinder®
(A key resource for finding the best government and nonprofit health
and human services information on the Internet)
- HealthWeb.org
(A collaborative project of several health sciences libraries that
provides online educational resources in a wide variety of medical
areas)
- IntelliHealth
(Health news and content as well as access to tools and risk assessments)
- Johns
Hopkins Center for Communication Programs (A Searchable Database
of Internet Resources in Population, Health and Development)
- Mayo Clinic
Health Oasis (Reliable Health Information for a Healthier Life)
- MedBroadcast.com
(Canada's Source for Health Information)
- MediLexicon
(An online resource containing all pharmaceutical acronyms and
abbreviations and their meanings)
- MEDLINEplus
(Extensive information from the National Institutes of Health and
other trusted sources on over 500 diseases and conditions)
- MedWeb
(Resource for health associations and consumer health information)
- National Institutes
of Health (Acquire new knowledge to help prevent, detect, diagnose,
and treat disease and disability)
- National Library
of Medicine (Online library of medical books, journals, and reports)
- National
Organization for Rare Disorders, Inc. (NORD) (Committed to the
identification, treatment, and cure of rare disorders through programs
of education, advocacy, research, and service)
- NOAH: New
York Online Access to Health (Full-text consumer health information
in English and Spanish)
- PDR Getting
Well Network
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questions. Use this site to learn more about detecting, preventing,
and treating a variety of medical conditions) |
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- RehabTrials.org
(Dedicated to the promotion and support of clinical trials in medical
rehabilitation research)
- Virtual Hospital
(General information helping health care providers better care for
patients, and helping patients live healthier lives)

Discussion Boards

Cardiology/Vascular Diseases
Dental/Maxillofacial Surgery
Dermatology/Plastic Surgery
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Endocrinology
Gastroenterology
- American
Liver Foundation (National, voluntary non-profit health agency
dedicated to preventing, treating and curing hepatitis and all liver
diseases through research, education and support groups)
- Crohn's and Colitis
Foundation of America (News updates, find-a-doctor, physician
resources, links, recent legislation)
- The Gastro-Intestinal
Research Foundation of Chicago (A group of people from all walks
of life united in a common effort to support research on the causes
and cures of digestive diseases)
- Hepatits.org
(Resource for information on various types of hepatitis)
- Hepatitis B Coalition
(Childhood, adolescent, and adult immunization information and hepatitis
B educational materials)
- Hepatitis B Foundation
(Information on Hepatitis B, Drug watch, specialists)
- International Foundation
for Functional Gastrointestinal Disorders (Mission is to inform,
assist, and support people affected by functional gastrointestinal
disorders or bowel incontinence)
- Intestinal
Disease Foundation (IDF is a nonprofit organization whose mission is to
improve the quality of life of adults and children affected by chronic
digestive illness through information, guidance and support.)
- The North American
Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
(NASPGHAN strives to improve the care of infants, children and adolescents
with digestive disorders by promoting advances in clinical care, research
and education)
- Pancreas.org
(Web-site designed as a tool for patients with pancreatic disorders)
Hematology
Immunology/Infectious Diseases
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Musculoskeletal
- Arthritis Foundation
(supports research to find ways to cure and prevent arthritis and
seeks to improve the quality of life for those afflicted by arthritis)
- Arthritis
Research Institute of America, Inc (Identify the causes, seek
preventive measures, and find a cure for osteoarthritis)
- Fibromyalgia Support Center (A resource for fibromyalgia information, including what it is, its symptoms, how to treat it, the latest research, as well as dozens of articles on fibromyalgia and chronic fatigue syndrome)
- The Foundation for
Spinal Cord Injury Prevention (Dedicated to the prevention, care
and cure of spinal cord injuries through public awareness, education
and funding research)
- Lupus Foundation
of America (Increase awareness and alleviation of suffering through
service and support, and the eradication of lupus through research)
- Muscular Dystrophy
Association (News and information, MDA research and services for
adults and children with neuromuscular diseases and their families)
- National Osteoporosis
Foundation (Raise awareness about preventing, diagnosing and treating
osteoporosis)
Nephrology/Urology
- American
Liver Foundation (National, voluntary non-profit health agency
dedicated to preventing, treating and curing hepatitis and all liver
diseases through research, education and support groups)
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Kidney & Urology Foundation of America (Foundation dedicated to
helping millions of Americans - young and old - avoid the debilitating
effects of kidney, urinary and related diseases.)
- Lupus Foundation
of America (Dedicated to the improved detection of lupus through
increased awareness, alleviation of suffering through service and
support, and ultimately, the eradication of lupus through research)
- Prostate.org
(Information on Prostatitis, Benign Prostatic Hypertrophy and Prostate
Cancer)
- Urology
Journals (List of journals as well as healthcare and urology links)
Neurology
- Alzheimer's Association
(Information for patients, families, physicians, as well as recent
research and glossary)
- Autism
Society of America (Serving the needs of individuals with autism
and their families through advocacy, education, public awareness,
and research)
- International MS
Support Foundation (Search an index, visit the physician's chat
room, see the newsletter, and more)
- The Myelin Project
(Aims to accelerate research on myelin repair. Includes introduction,
publications, project events)
- National Multiple Sclerosis Society (Provides up-to-date information to individuals with MS, their families, and healthcare providers)
- National Neurofibromatosis
Foundation, Inc. (Sponsors scientific research, develops programs
that will increase public awareness of NF)
- National Parkinson
Foundation, Inc. (Educate general public and medical practitioners,
provide diagnostic and therapeutic services and improve the quality
of life for both Parkinson's patients and their caregivers)
- National Stroke
Association (Search and directory, basic information, prevention)
- The Neuropathy
Association (A public, nonprofit organization to help those who
suffer from disorders that affect the peripheral nerves)
Obstetrics/Gynecology
- TheBreastCareSite.com
(Provides breast cancer survivors with accurate information about everything from
post-surgery options and products to information about insurance and intimacy issues)
- Endometriosis
Association (Provide information and support to females, conducting
and promoting research related to endometriosis)
- The Endometriosis
Research Center (ERC) (Raises awareness about Endometriosis throughout
the medical and lay communities, offers women the opportunity to participate
in research)
- Living Beyond Breast Cancer
(A non-profit educational organization committed to empowering all women affected
by breast cancer to live as long as possible with the best quality of life)
- The North American
Menopause Society (Includes information on perimenopause, early
menopause, menopause symptoms and long term health effects of estrogen
loss)
- Obgyn.net (A
global, physician-reviewed network for doctors, medical professionals,
women and the medical industry)
- SusanLoveMD.com
(Information on risk, prevention, and treatment for primary and metastatic
breast cancer, as well as issues and information relevant to menopause,
hormone replacement therapy, and other mid-life health issues)
- American Cancer
Society (Voluntary health organization dedicated to eliminating
cancer as a major health problem by preventing cancer, saving lives,
and diminishing suffering from cancer, through research, education,
advocacy, and service)
- The
Annie Appleseed Project (Acts to inform, educate, advocate and
raise awareness for people with cancer, family and friends interested
in, or using alternative/complementary cancer therapies (CAM))
- Aplastic Anemia & MDS International Foundation, Inc. (Information, Educational Materials,
Services, treatment studies, news, recent research)
- Bonetumor.org
(An educational web-site for physicians, patients, and friends who
are interested in learning about all types of tumors and cancers that
affect the skeletal system)
- TheBreastCareSite.com
(Provides breast cancer survivors with accurate information about
everything from post-surgery options and products to information about
insurance and intimacy issues)
- Breast Cancer
Answers (Resources include a clinical trials matching system,
various links, a unique artwork collection from those touched by breast
cancer, and personal stories)
- BioImmune.com
(Prevention tips, recent cancer headlines, weekly newsletter, various
cancer services, articles, various cancer types searchable by index)
- Cancer Treatment Research
Foundation (CTRF) (Focused on identifying and funding innovative
science-based clinical cancer research worldwide)
- Colorectal
Cancer Network (A support network for colorectal cancer that promotes
aggressive awareness, screening, early detection programs and legislative
actions)
- Facing Our
Risk of Cancer Empowered, Inc. (FORCE) (Non-profit organization
for women who are at high risk of getting these cancers due to their
family history and genetic status, and for members of families in
which a BRCA mutation may be present.)
- International Myeloma
Foundation (Patient seminars, networking, scientific advisors,
clinical meetings, newsletter, and news items)
- The Leukemia
and Lymphoma Society (Individualized information for Patients
and Family, Donors and Sponsors, Public and Press, Science and Professionals)
- Living Beyond Breast
Cancer (A non-profit educational organization committed to empowering
all women affected by breast cancer to live as long as possible with
the best quality of life)
- Lung
Cancer Online (Lung cancer resources for people with lung cancer
and their families)
- Melanoma
International Foundation (Creates and supports the most effective
programs for the prevention, early detection, and treatment of melanoma)
- Melanoma Patients'
Information Page (A noncommercial site founded to provide support
and information to melanoma patients and those who care for them)
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Mesothelioma-Asbestos-Help.com (Online resource dedicated to informing
patients about mesothelioma (a rare form of cancer in which malignant
cells are found in the mesothelium), treatment options for the cancer,
and about the dangers of inhaling asbestos)
- National
Cancer Institute Oncology Clinical Trials Resources for Patients and
Health Professionals (Treatment options, clinical trial listings,
risks and prevention, recent literature, support resources, index
of various cancer types)
- National Cervical
Cancer Coalition Home Page (Health news, survivors, caregivers,
NCCC chapters, Early Detection Program, research and treatment, and
access to the Medical Advisory Panel)
- National
Children's Cancer Society (A non-profit tax exempt organization
whose mission is to provide direct financial support to children with
cancer and their families, for expenses related to cancer treatment)
- National Consortium
of Breast Centers (Find breast health facilities and breast professionals
across the nation by identifying a name, city or state)
- OncoLink Cancer
News (Information about specific types of cancer, updates on cancer
treatments and news about research advances)
- The Sarcoma
Foundation of America (An advocate for increased research to find
new and better therapies with which to treat patients with sarcoma)
- Support for People
with Oral and Head and Neck Cancer (SPOHNC) (A self-help organization
involved in development of programs of support for head and neck cancer
patients)
- The Walter Payton
Cancer Fund (Sponsors the world's most innovative and promising
clinical research in complementary medicine and integrative oncology)
- SusanLoveMD.com
(Information on risk, prevention, and treatment for primary and metastatic
breast cancer, as well as issues and information relevant to menopause,
hormone replacement therapy, and other mid-life health issues)
- Y-ME National Breast
Cancer Organization (Find information about breast cancer, and
resources to turn to for support and further assistance)
Ophthalmology
Otolaryngology
Pediatrics/Neonatology
- The
Arc (The national organization of and for people with mental retardation
and related disabilities and their families)
- Down Syndrome
- Understanding the Gift of Life (Support groups, events, conferences
and medical articles)
- Kidshealth.org from
The Nemours Foundation (Has information on infections, behavior
& emotions, food & fitness, and growing up healthy)
- March of Dimes
Home Page (Help with goals regarding birth defects, infant mortality,
low birthweight, and lack of prenatal care)
- National
Children's Cancer Society (A non-profit tax exempt organization
whose mission is to provide direct financial support to children with
cancer and their families, for expenses related to cancer treatment)
- National
Institute of Child Health and Human Development - Turner Syndrome
(Provides general information about Turner Syndrome and information
pertaining to Clinical Trials in this area of research)
- The North American Society for
Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) (NASPGHAN strives to
improve the care of infants, children and adolescents with digestive disorders by promoting
advances in clinical care, research and education)
- Pediheart
(A web-site for kids with heart disease and their parents)
- The Turner Syndrome Society
(TSS) of the United States (Provides assistance, support, and education to girls and
women with Turner syndrome, their families, physicians, and the interested public.
Pharmacology/Toxicology
- Alcoholics
Anonymous (A collection of Alcoholics Anonymous and related information)
- The Arc (The national
organization of and for people with mental retardation and related
disabilities and their families)
- Children and Adults
with ADD (Through family support and advocacy, public and professional
education, CHADD works to ensure that those with ADD reach their potential)
- NAMI (National Alliance
for the Mentally Ill) (Dedicated to improving the lives of people
with severe mental illnesses by providing information through links,
news, and other resources)
- National Mental
Health Information Center (For users of mental health services,
the general public, providers, and the media in finding information
about mental health)
- The National
Sleep Foundation (An independent nonprofit organization dedicated
to improving public health and safety by achieving understanding of
sleep and sleep disorders, and by supporting education, sleep-related
research, and advocacy)
Pulmonary/Respiratory Diseases
- Allergy, Asthma
and Immunology Online (Information and news service for patients,
family, purchasers of group health care programs, and the news media)
- Allergy and Asthma
Network/Mothers of Asthmatics, Inc (Dedicated to eliminating morbidity
and mortality due to asthma and allergies through education, advocacy,
community outreach, and research)
- American Academy
of Allergy, Asthma & Immunology (Study and treatment of allergic
diseases through education, research and cooperation)
- The American Lung
Association (Fight lung disease in all its forms, with special
emphasis on asthma, tobacco control and environmental health)
- The
Coalition for Pulmonary Fibrosis (A nonprofit organization to
further education, patient support and research efforts for pulmonary
fibrosis, specifically idiopathic pulmonary fibrosis)
- Cystic-L (Free
email service for the exchange of information and support specific
to cystic fibrosis)
- National
Emphysema Foundation (Improve the quality of life of those who
have emphysema, asthma, and related diseases through education, research
and direct patient care)
- National
Emphysema Treatment Trial (First multi-center clinical trial designed
to determine the role, safety, and effectiveness of bilateral lung
volume reduction surgery (LVRS) in the treatment of emphysema)
- Pulmonary
Fibrosis Foundation (Supports research to find a way to cure and
control Pulmonary Fibrosis. In addition it supports treatment Centers
to help those afflicted)
Rheumatology
- Arthritis Foundation
(Work to discover vital new strategies to prevent, control, and cure
arthritis)
- Arthritis
Research Institute of America, Inc (Identify the causes, seek
preventive measures, and find a cure for osteoarthritis)
- The Chronic Fatigue
and Immune Dysfunction Syndrome (CFIDS) Association of America
(Build recognition, secure response from the federal government, stimulate
research, improve abilities to diagnose, and provide information about
CFIDS)
- Lupus Foundation
of America (Improve detection through increased awareness, alleviation
of suffering, and the eradication of lupus through research)
- Spondylitis
Association of America (Quality information and an interactive
forum)
Trauma/Emergency Medicine
- Pillbot.com
(Searches daily for prescription drug and medication pricing on
generic and name-brand drugs and medicine)
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