Resources for Patients
The following are select
national and international resources
pertaining to disease, genetic disorders and clinical trials.
If you are aware of a resource we should include,
please submit it through Feedback.
America's Athletes with Disabilities (AAD) --
The mission of AAD is to raise and manage the funds necessary to support the Victory
Games, athletic competitions held around the country that offer adults and youth
with disabilities crucial and valuable experiences in personal growth and achievement.
American Lyme Disease Foundation, Inc. --
American Lyme Disease Foundation is dedicated to the prevention, diagnosis and treatment of
Lyme disease and other tick-borne infections. The Foundation plays a key role in providing reliable
and scientifically accurate information to the public, medical community and government agencies
about tick-borne diseases and their effects on human health and quality of life.
American Parkinson Disease Association (APDA) --
The American Parkinson Disease Association (APDA), headquartered in New York City, is the country’s largest grassroots
organization serving the 1.5 million Americans with Parkinson’s disease and their caregivers in three vital areas,
including Research, Patient and caregiver support; and Education.
Anxiety Disorders Association of America (ADAA) --
The ADAA is a non-profit organization dedicated to informing the public, healthcare professionals and legislators
that anxiety disorders are real, serious and treatable. The ADAA promotes the early diagnosis, treatment and
cure of anxiety disorders, and is committed to improving the lives of the people who suffer from them.
Autism Speaks
-- Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and
cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and
to bringing hope to all who deal with the hardships of this disorder.
Breastcancer.org
-- Breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete, and
up-to-date information about breast cancer.
CancerCare -- A national non-profit organization
whose mission is to provide free professional help to people with all cancers through
counseling, education, information and referral and direct financial assistance.
Center to Advance Palliative Care (CAPC) --
the Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability
of palliative care services in hospitals and other health care settings. CAPC is supported by the Aetna Foundation,
Brookdale Foundation, JEHT Foundation, the John A. Hartford Foundation and the Robert Wood Johnson Foundation.
Direction and technical assistance are provided by Mount Sinai School of Medicine, New York.
Centers for Disease Control and Prevention (CDC) --
The CDC is an agency of the U.S. Department of Health and Human Services. The CDC's
mission is to promote health and quality of life by preventing and controlling disease,
injury, and disability. The site provides a wide range of health related information with
links to national and international resources.
CenterWatch -- CenterWatch
provides an international listing of industry- and government-sponsored clinical trials,
as well as other resources for patients and researchers.
Chemocare.com --
Chemocare.com is designed to provide the latest information about
chemotherapy, chemo side effects, and chemotherapy drug information to patients and their
familites, caregivers, and friends. Chemocare.com is a program of the Scott Hamilton CARES
Initiative, and content is provided by the Cleveland Clinic Cancer Center.
Chordoma Foundation --
The Chordoma Foundation is a nonprofit organization dedicated to curing chordoma - a slow
growing, relentless bone cancer that occurs in the head and spine in people of all ages.
Chordoma is typically resistant to chemotherapy and radiation, and is prone to multiple recurrences.
The average survival after diagnosis is 7 years. The Foundation's mission is to improve the
lives of chordoma patients by rapidly developing effective treatments and ultimately a cure
for this devastating disease.
ClinicalTrials.gov --
ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical
research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate,
locations, and phone numbers for more details. The information provided on ClinicalTrials.gov should be used in
conjunction with advice from health care professionals.
CloneSafety.org --
CloneSafety.org, sponsored by Cyagra, stART Licensing, and ViaGen in cooperation
with the Biotechnology Industry Organization, provides scientifically supported
information about animal cloning.
Children Affected by AIDS Foundation (CAAF) --
The mission of CAAF is to make a positive difference in the lives of children infected
with HIV and affected by AIDS. CAAF accomplishes this by helping meet their diverse,
special needs, advocating and educating on their behalf, and bringing joy and fun into their
lives.
Drug3k -- Drug3k is a project of European Organisation of Family
Health Research - a non-profit research and education organization that features detailed information on prescription
and medications including description, image drug, use, dosage, storage, precautions, and side effects.
DrugDigest -- DrugDigest is a noncommercial,
evidence-based, consumer health and drug information site dedicated to empowering consumers to
make informed choices about drugs and treatment options.
European Organisation of Family Health Research (EOFHR) --
The European Organisation of Family Health Research (EOFHR) is a non-profit organization whose mission is
to improve human health through research, education.
Food & Drug Administration -- Source of
information about the U.S. Food and Drug Administration, with information about newly
approved drugs, medical devices, and more.
Foundation for Biomedical Research (FBR) -- The FBR,
established in 1981, is the nation’s oldest and largest organization dedicated to improving
human and animal health by promoting public understanding and support for the humane and
responsible use of animals in medical and scientific research.
Genetic & Rare Conditions --
Comprehensive source of information about genetic and rare conditions, support groups and
information provided by the University of Kansas Medical Center.
GIST Cancer Research Fund (GCRF) --
The Mission of the GIST Cancer Research Fund to create funding to support research which is vital to the
long-term survival of those coping with Gastrointestinal Stromal Tumors (GIST); to provide patients and practitioners
with more data on GIST; to work side-by-side with medical facilities, creating GIST tumor tissue banks locally
and internationally; to provide support for patients and families coping with GIST; to fund further research
that creates methods of early detection for GIST; and more.
Global Health Council -- The Global Health
Council is the world's largest membership alliance dedicated to saving lives by improving
health throughout the world. The Council works to ensure that all who strive for improvement
and equity in global health have the information and resources they need to succeed.
Gluten Intolerance Group (GIG) --
The Gluten Intolerance Group is a non-profit organization dedicated to
increasing awareness of gluten intolerance by providing information, and education,
as well as support, to those with celiac disease/dermatitis herpetiformis, their families,
health care professionals and the general public.
Growth House -- Growth House provides an
international gateway to resources for life-threatening illness and end of life care.
The primary mission is to improve the quality of compassionate care for people who are
dying through public education and global professional collaboration.
HealthTalk -- HealthTalk
is a free, around-the-clock service that connects patients and family members worldwide with leading medical
experts and also with other people like themselves.
Healthtouch® -- Healthtouch® is a source
for health information, health products, and health services, including: drug information,
a health resource directory, and information on health, wellness, diseases, and illnesses.
Hepatitis B Foundation -- The Hepatitis B Foundation is the
only national non-profit organization solely dedicated to the global problem of hepatitis B, and is
focused on research, promoting disease awareness, supporting immunization and treatment initiatives,
and serving as the primary source of information for patients and their families, the medical and scientific
community, and the general public.
Hep C Connection -- Hep C Connection, based in
Denver, is the country's largest Hepatitis C patient network.
Hospital Compare -- Hospital Compare -
a quality tool for adults, including people with Medicare. This tool provides you with
information on how well the hospitals in your area care for all their adult patients with
certain medical conditions. This information will help you compare the quality of care
hospitals provide. Hospital Compare was created through the efforts of the Centers for
Medicare and Medicaid Services (CMS) and organizations that represent hospitals, doctors,
employers, accrediting organizations, other Federal agencies and the public.
IFPMA Clinical Trials Portal
-- The IFPMA Clinical Trials Portal, provided by the International Federation of Pharmaceutical Manufacturers
and Associations, on behalf of its Member Companies and Associations, and IBM Corp. has been designed as a
portal to search for comprehensive information on on-going clinical trials or results of completed
trials conducted by the pharmaceutical industry.
Immunization Action Coalition
-- The Immunization Action Coalition works to increase immunization rates and prevent disease by creating
and distributing educational materials for health professionals and the public that enhance the delivery of safe
and effective immunization services.
Inside RA -- Inside RA is a comprehensive educational resource
for people with RA provided by Amgen and Wyeth Pharmaceuticals.
Lewy Body Dementia Association -- The Lewy
Body Dementia Association is a 501(c)(3) nonprofit organization dedicated to raising awareness of the Lewy
body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances.
The Association's purposes are charitable, educational, and scientific.
Locks of Love -- Locks of Love is
a non-profit organization that provides hairpieces to financially disadvantaged
children across the U.S. under age 18 suffering from long-term medical hair loss.
Lyme Disease Association, Inc. (LDA)
-- Lyme Disease Association is an organization that is dedicated to Lyme disease education, prevention,
and raising research dollars.
Lyme Disease Foundation (LDF) -- Lyme Disease Foundation
is a nonprofit association that is dedicated to finding solutions for tick-borne disorders. Realizing the
ability to find solutions involves a multi-discipline effort, the LDF includes the four cornerstones of
progress (businesses, patients, government, and the medical community) to work together to find solutions
to tick-borne disorders.
Lyme Disease Network -- Lyme Disease Network
is a non-profit association that operates entirely on individual donations and is responsible for the
LymeNet series of services available on the Internet since 1994. It's absolutely necessary that we support
LymeNet to continue educating the public about the prevention and treatment of Lyme and other tick borne
diseases.
March of Dimes -- The March of Dimes was founded in 1938
by President Roosevelt (National Foundation for Infantile Paralysis) to fight polio. Today, the Mission of the
March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and
infant mortality.
MayoClinic Health Oasis -- The Mayo Clinic
Health Oasis provides a wide range of reliable health information and patient resources
that is directed by a team of Mayo physicians, scientists, writers and educators.
MEDLINEplus -- MEDLINEplus, an
educational resource tool, of the National Library of Medicine, provides access to
over nine million published scientific articles, and access to a directory of health
topics for consumers and professionals, physician referral directories, medical
terminology, and more.
Michael J. Fox Foundation for Parkinson's Research
-- The Michael J. Fox Foundation for Parkinson's Research is dedicated to ensuring the development of a cure
for Parkinson's disease within this decade through an aggressively funded research agenda.
Miracle League --
The Miracle League is a baseball league for disabled children that began in Atlanta,
and is growing nationally. Learn about the league, how to start a league, how to support
the league, and more.
National Alliance for the Mentally Ill, (NAMI) --
The mission of NAMI is to improve the quality of life for people with chronic mental
illnesses and their families. NAMI provides support groups, informs and educates, reachs
out to the community, advocate for improved services and research, and fight to eliminate
stigma in mental illness.
National Autism Association (NAA)
-- The mission of the National Autism Association is to educate and empower families affected by
autism and other neurological disorders, while advocating on behalf of those who cannot fight for
their own rights.
National Breast Cancer Foundation --
The mission of The National Breast Cancer Foundation is to save lives by increasing awareness of breast
cancer through education and by providing mammograms for those in need.
National Cervical Cancer Coalition (NCCC) --
The National Cervical Cancer Coalition (NCCC) is a grassroots nonprofit organization dedicated to serving
women with, or at risk for, cervical cancer and HPV disease.
National Child Traumatic Stress Network (NCTSN) --
National Child Traumatic Stress Network (NCTSN), established by Congress in 2000, is a unique collaboration of
academic and community-based service centers whose mission is to raise the standard of care and increase access
to services for traumatized children and their families across the United States.
National Coalition for Women with Heart Disease --
WomenHeart - National Coalition for Women with Heart Disease is the only patient-led national non-profit organization
that educates and advocates for the 8 million American women living with heart disease. With 16,000 members and 50
local support groups, WomenHeart gives women heart patients and physicians a platform to spread the common
message of early detection, accurate diagnosis and proper treatment so all women can lead healthier lives.
National Comprehensive Cancer
Network (NCCN) -- The NCCN was formed to create cancer-management strategies for large
employers and third-party payers. Its mission is to integrate the experience of member
cancer centers to ensure delivery of high-quality, cost-effective services to cancer
patients across the country.
National Foundation for Infectious Diseases (NFID) --
The National Foundation for Infectious Diseases (NFID) is a non-profit, tax-exempt (501c3) organization
founded in 1973 and dedicated to educating the public and healthcare professionals about the causes,
treatment and prevention of infectious diseases.
National Organization for Rare Disorders (NORD) --
NORD is a unique federation of individuals and organizations working together to build a better world for people affected
by rare diseases.
National Marrow Donor Program (NMDP) --
NMDD connects bone marrow and cord blood transplant donors with patients. Bone marrow and cord
blood transplants are a life-changing treatment for people with leukemia, lymphoma and many
other diseases.
Natural Products Alert (NAPRALERT) --
NAPRALERT, provided by the University of Illinois, Chicago, is a relational database of all natural products, including
ethnomedical information, pharmacological/biochemical information of extracts of organisms in vitro, in situ, in vivo,
in humans (case reports, non-clinical trials) and clinical studies.
OrganDonor.gov --
OrganDonor.gov provided by the U.S. Department of Health and Human Resources is an extensive resource for anyone
intersted in organ donation.
Ovarian Cancer National Alliance --
In September 1997, leaders from seven ovarian cancer groups joined forces to form the Ovarian Cancer National Alliance.
Their goal is to establish a coordinated national effort to place ovarian cancer education, policy and research issues
prominently on the agendas of national policy makers and women's health care leaders.
PADRES Contra El Cáncer --
PADRES Contra El Cáncer, founded in 1985, brings together children, families, healthcare professionals
and community leaders to promote a comprehensive understanding of childhood cancer and other blood disorders,
as well as, effective methods for their treatment.
Painted Turtle --
The Painted Turtle, a 501(c) (3) non-profit organization, is the sixth addition to Paul Newman’s
family of Hole in the Wall Gang Camps for seriously ill children. It is also the only multi-disease camp and family care
center of its kind on the West Coast. Through educational, therapeutic, safe, and just
plain fun summer camp and year-round programs, The Painted Turtle provides a life-changing
experience to children whose daily struggles often diminish both their desire to be well
and their ability to lead a rich, productive life.
Pancreatic Cancer Action Network (PanCAN) --
The Pancreatic Cancer Action Network, established in 1999, is the first national patient advocacy
organization for the pancreatic cancer community. PanCAN works to focus national attention on the need to
find a cure for pancreatic cancer. PanCAN also funds research grants for pancreatic cancer, as
well as providing patient services.
Parkinson Pipeline Project --
The Parkinson Pipeline Project is a grassroots group of advocates whose goal is to provide the patient perspective
in the treatment development process. Through education, consultation, and participation with all stakeholders,
including industry and the FDA, the Parkinson Pipeline Project hopes to increase clinical trial participation
and accelerate approved treatment options.
Partnership to Fight Chronic Disease (PFCD) --
The Partnership to Fight Chronic Disease is a national coalition of patients, providers, community organizations,
business and labor groups, and health policy experts, committed to raising awareness of policies and practices
that save lives and reduce health costs through more effective prevention and management of chronic disease.
PatientINFORM.org -- PatientINFORM.org,
scheduled to launch as a pilot project in Spring 2005, is a free, online service dedicated to disseminating original
medical research directly to consumers. A collaborative effort of leading voluntary health
organizations, scholarly and medical publishers, medical societies, and information
professionals, patientINFORM will provide patients and their caregivers with online
access to up-to-date, reliable research for specific diseases.
PDtrials.org -- PDtrials.org is a resource for
up-to-date information on Parkinson's disease clinical trials currently enrolling participants in the U.S. by symptom and
location, as well as the latest news and views on what's happening in the world of Parkinson's trials.
Prostate Cancer Foundation -- The
Prostate Cancer Foundation (PDF) is the world's largest philanthropic source of support for prostate cancer
research. The PCF has a single goal: To find better treatments and a cure for recurrent prostate cancer.
Public Responsibility in Medicine and Research
(PRIM&R) -- The PRIM&R is committed to the advancement of research programs
and the consistent application of ethical precepts in medicine and research. Topics
addressed include: the ethical and procedural issues surrounding the operation of
Institutional Review Boards and Institutional Animal Care and Use Committees, the range of
problems surrounding AIDS research and treatment, reproductive and other technologies and
their effects on patient care, healthcare ethics committees, scientific integrity and
conflict of interest, and the general questions surrounding academic/industrial relations.
PubMed -- A National Library of
Medicine's search service to access the 9 million citations in MEDLINE and Pre-MEDLINE
(with links to participating on-line journals), and other related databases.
Research America -- Research
America, founded in 1989, is a not-for-profit, membership-supported, public education and
advocacy alliance. Its mission is to make medical research a much higher national
priority.
Smile Train -- Smile Train
is focused on solving a single problem: cleft lip and palate. Their mission is to provide free cleft surgery
for millions of poor children in developing countries, and to provide free cleft-related training for doctors
and medical professionals.
Society for Clinical Trials --
The Society for Clinical Trials, created in 1978, is an international professional organization dedicated to the
development and dissemination of knowledge about the design, conduct and analysis of government and
industry-sponsored clinical trials and related health care research methodologies.
Stand Up To Cancer --
Stand Up To Cancer is a charitable services fund of the Entertainment Industry Foundation, a 501(c)3 tax-exempt
organization.
Susan G. Komen Breast Cancer Foundation --
The Susan G. Komen Breast Cancer Foundation, founded in 1982, is a global leader in the fight against
breast cancer through its support of innovative research and community-based outreach programs.
The Body: Multimedia AIDS and HIV
Information -- Obtain the latest news on AIDS & HIV research, reports on
scientific developments, Q&A from specialists, large collection of linked resources,
including discussion groups.
Tourette Syndrome Association, Inc. (TSA) -- The Tourette Syndrome
Association, Inc., founded in 1972 in Bayside New York, TSA is the only national voluntary non-profit membership
organization in this field. The mission of the TSA is to identify the cause of, find the cure for and control the
effects of Tourette Syndrome.
TrialsCentral -- The mission of TrialsCentral,
launched in 2001, is to improve access to current and comprehensive clinical trials information to support
informed health care decision-making. Funds to support the web site come from public and private groups,
donations, and honoraria.
Your Disease Risk -- Your Disease Risk
is a source on prevention where you can find out your risk of developing five of the most important
diseases in the United States and get personalized tips for preventing them.
WellnessWeb -- WellnessWeb is a
collaboration of patients, healthcare professionals, and other caregivers. Access
information about clinical trials, community health, drug dosages and compliance,
treatment options and research, how to select a health care provider, reports on dozens of
illnesses and conditions, tips about healthy lifestyles, complementary treatment
alternatives and options, and many more topics.
Wigs for Kids --
Wig for Kids is a 501(c)(3) non-profit organization that provides hair replacement systems to
children who have lost their hair due to chemotherapy, radiation treatments, alopecia, burns, or other
medical circumstances.
Williams Syndrome Association --
The Williams Syndrome Association is dedicated to enriching the lives of individuals with characteristics of
Williams syndrome.
Women’s Bioethics Project (WBP)
-- Women’s Bioethics Project (WBP) is a nonprofit, nonpartisan public policy institute
dedicated to ensuring that women’s voices, health, and life experiences are brought to
bear on ethical issues in health care and biotechnology. The Women's Bioethics Project
focuses on three main issue areas: neuroethics, women's health, and reproductive technologies.
Young Survival Coalition (YSC) -- The YSC
is the only international, non-profit network of breast cancer survivors and
supporters dedicated to the concerns and issues that are unique to young women and breast cancer.
Through action, advocacy and awareness, the YSC seeks to educate the medical, research, breast
cancer and legislative communities and to persuade them to address breast cancer in women 40 and
under. The YSC also serves as a point of contact for young women living with breast cancer.
We welcome your suggestions and comments.
If you are aware of a resource we should include,
please submit it through Feedback.
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