Patient Advocacy and Support Organizations
Financial and Medical Assistance Organizations
Healthcare Tools and Resources
Patient Support and Advocacy Organizations
Acoustic Neuroma Association
The Acoustic Neuroma Association provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves. The association also furnishes information on patient rehabilitation to physicians and health care personnel, promotes research on acoustic neuroma, and educates the public regarding symptoms suggestive of acoustic neuroma, thus promoting early diagnosis and successful treatment.
Adrenal Insufficiency United
Adrenal Insufficiency United is committed to enhancing the lives and health of our friends and family affected by adrenal insufficiency. We will do this by raising awareness, providing support, and working to ensure emergency protocols are in place to treat adrenal crisis in all settings.
The nation’s leading Social Security disability (SSDI) representation company, is providing free Web content on the SSDI process for those within the disability advocacy community.
American Association for Marriage and Family Therapists
AAMFT and the California Division have been advancing the profession of marriage and family therapy for over 60 years. AAMFT-CA represents more than 3300 licensed professional therapists (MFT’s) in California who uphold the high training and practice standards of our international professional association (AAMFT).
AAMFT-CA invites you to explore their site for current information about families, therapy, and clinical issues.
American Brain Tumor Association
The American Brain Tumor Association is a not-for-profit, independent organization dedicated to
- Eliminating brain tumors by funding and encouraging research
- Providing educational materials and objective resource information to patients, their families, and the medical professionals who treat them
- Promoting excellence in patient care
Advocating the investigation of research and treatment approaches.
American Cancer Society
The American Cancer Society is the nationwide community-based 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.
American Diabetes Association
To prevent and cure diabetes and to improve the lives of all people affected by diabetes.
American Medical Association
Physicians dedicated to the health of America.
American Thyroid Association
The mission of the American Thyroid Association is to promote scientific and public understanding of the biology of the thyroid gland and the pathogenesis and management of its diseases in order to prevent, diagnose and treat thyroid diseases and thereby improve quality of life.D.
Australian Pituitary Foundation Ltd
Now incorporating the Children’s Growth Foundation Ltd.
The APF’s mission is to provide support to those who have experienced pituitary gland conditions; promote awareness and disseminate information helpful to the medical community, public, pituitary patients and their families.
Brain Tumour Foundation of Canada
The Brain Tumour Foundation of Canada supports research into the cause and cure of brain tumors, strives to support and improve the quality of life of those affected, and provides information about brain tumors to the public at large.
Vision: To find a cure for brain tumors and to improve the quality of life of those affected.
Mission: To fund research, provide patient and family support services, and educate the public.
British Snoring & Apnoea Association
The British Snoring & Apnoea Association is dedicated to helping individuals determine the causes and appropriate treatments for snoring and sleep apnoea.
Canadian Diabetes Association
Our mission is to promote the health of Canadians through diabetes research, education, service and advocacy.
Cancer Care is dedicated to providing emotional support, information, and practical help to people with cancer and their loved ones. Cancer Care has helped over a million people nationwide through its toll-free Counseling Line and teleconference programs, its office-based services, and via the Internet. All services are provided free of charge and are available to people of all ages, with all types of cancer, at any stage of the disease. Cancer Care’s reach, including its cancer awareness initiatives, also extends to family members, caregivers, and professionals, providing vital information and assistance.
A gateway to the most recent and accurate cancer information from the National Cancer Institute, a component of the National Institutes of Health.
Central Brain Tumor Registry of the United States
The Central Brain Tumor Registry of the United States, CBTRUS, is a not-for-profit corporation committed to providing a resource for gathering and disseminating current epidemiologic data on all primary brain tumors, benign and malignant, for the purposes of accurately describing their incidence and survival patterns, evaluating diagnosis and treatment, facilitating etiologic studies, establishing awareness of the disease, and, ultimately, for the prevention of all brain tumors.
Chemotherapy and Beyond – Chemo Care
Scott Hamilton’s chemotherapy site offers the latest chemo information for cancer patients and their families, caregivers and friends.
Childhood Brain Tumor Foundation
The Childhood Brain Tumor Foundation was founded by families, friends and physicians of children with brain tumors. Our mission is to raise funds for scientific research and heighten public awareness of this most devastating disease and to improve prognosis and quality of life for those that are affected by it.
Children’s Brain Tumor Foundation
The Children’s Brain Tumor Foundation, a non-profit organization, was founded in 1988 by dedicated parents, physicians and friends. Our mission to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.
The Chordoma Foundation is a nonprofit organization working to improve the lives of chordoma patients by accelerating research to develop effective treatments for chordoma, and by helping patients to get the best care possible.
Founded in 2005, ChronicBabe’s mission is to empower young women with chronic illness to take charge and live their lives to the fullest.
Collaborative Family Healthcare Association
Integrated Primary Care combines medical and behavioral health services to more fully address the spectrum of problems that patients bring to primary medical care. Because the vast majority of patients in primary care have either a physical ailment that is affected by stress, problems maintaining healthy lifestyles or a psychological disorder, it is clinically effective and cost effective to make behavioral health providers part of primary medical care. IPC allows patients to feel that for any problem they bring, they have come to the right place. By teaming mental health and medical providers, IPC is the structural realization of the biopsychosocial model advocated so broadly in Family Medicine and Psychiatry. It is the reunification in practice of the mind and the body, for so long addressed in the separate worlds of medical and mental health treatment.
For more information, visit: http://www.cfha.net/
Eating Disorders and Pituitary Disease
The PNA is proud to recommend several sites that deal with eating disorders, which can sometimes accompany pituitary disease. Please take a look at these sites:
And for our international visitors, this following site is filled with great info:
Familial Isolated Pituitary Adenoma (www.fipapatients.org)
Rarely pituitary adenomas can occur in families. If no other abnormality is associated then this condition is called Familial Isolated Pituitary Adenoma. Most often family members have acromegaly or prolactinoma, sometimes other types of adenomas. Further information is available on www.fipapatients.org.
Families USA is a nonprofit advocacy organization that offers resources on finding, choosing, and using health coverage.
German Acromegaly Register
The Head for the Cure Foundation is a 501(c)3 nonprofit organization dedicated to raising awareness and funding in the fight against brain cancer.
For more information, visit: http://www.headforthecure.org/
The PNA encourages you to check out the site managed by the Office of Disease Prevention and Health Promotion (ODPHP), U.S. Department of Health and Human Services. Their consumer health information portal, www.healthfinder.gov, has served the public for almost a decade by linking consumers and professionals to reliable health information, daily health news, and health-related organizations. Healthfinder uses thorough selection criteria to evaluate organizations, and they have chosen to spotlight the PNA for our work to spread the news on pituitary issues.
International Radiosurgery Support Association
The International Radiosurgery Support (IRSA) Association is an independent organization dedicated to providing educational information, emotional support, and physician and site referral on stereotactic radiosurgery. The Association promotes innovative research worldwide into the treatment of brain abnormalities, including tumors, lesions, and dysfunctions.
Staying informed of new developments in the world of medicine has never been easier or more convenient.
National Adrenal Diseases Foundation
The National Adrenal Diseases Foundation is a non-profit organization dedicated to providing support, information and education to individuals having Addison’s disease as well as other diseases of the adrenal glands.
The National Brain Tumor Society
National Brain Tumor Society brings together the best in brain tumor research and supportive patient services. We offer hope to patients, families, and caregivers during every stage of the treatment journey. We invest wisely and strategically in innovative research that will lead to advances and ultimately to a cure.
East Coast Office
124 Watertown Street, Suite 2D
Watertown, MA 02472
Phone: 617 924 9997
Fax: 617 924 9998
West Coast Office
22 Battery Street, Suite 612
San Francisco, CA 94111-5520
Phone: 415 834 9970
Fax: 415 834 9980
800 934 2873
800 770 8287
National Cancer Institute- Pituitary Tumor Treatment
Information and specifics on pituitary treatment from the National Institues of Health.
National Family Caregivers Association
This group provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals, and a bereavement program.
National Institute of Child Health and Human Development (NICHD)
The National Institute of Child Health and Human Development is part of the National Institutes of Health, U.S. Department of Health and Human Services. The NICHD conducts and supports laboratory, clinical and epidemiological research on the reproductive, neurobiologic, developmental, and behavioral processes that determine and maintain the health of children, adults, families and populations.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
The National Institute of Diabetes and Digestive and Kidney Diseases conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines.
National Institute of Neurological Disorders and Stroke (NINDS)
The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.
National Osteoporosis Foundation
The National Osteoporosis Foundation (NOF) was formally established in 1986 as the only nonprofit, voluntary health organization whose mission is to reduce and ultimately eliminate the widespread prevalence of osteoporosis through programs of research education and advocacy.
Osteoporosis & Men – National Resource Center
Their mission is to provide patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases, including osteoporosis, Paget’s disease of the bone, osteogenesis imperfecta, and hyperparathyroidism.
Pediatric Brain Tumor Foundation of the United States
- Find the cause and cure of childhood brain tumors through the support of medical research.
- Increase public awareness about the severity and prevalence of childhood brain tumors.
- Aid in early detection and treatment of childhood brain tumors.
- Support a national database on all primary brain tumors.
- Provide hope and emotional support for the thousands of children and families affected by this life threatening disease.
Sydney Pituitary Collaborative Group
The SPCG brings together the expertise of healthcare professionals (endocrinologists, neurosurgeons, pathologists, radiologists, radiation oncologists, medical oncologists, trainees) interested in advancing pituitary tumour management, education and research through collaboration. The group is led by Dr Ann McCormack from the Garvan Institute of Medical Research, Sydney.
The Nephrogenic Diabetes Insipidus Foundation
The NDI Foundation was formed to support education, research, treatment and cure for Nephrogenic Diabetes Insipidus. Our goal is to create a communication channel to serve the entire NDI community: patients and their families, researchers, physicians and other health care providers.
Well Spouse is a national, not for profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups meet monthly. Members can share their thoughts and feelings openly with others facing similar circumstances in a supportive, non-judgmental environment. WS support groups are also an excellent source for information on a wide-range of practical issues facing spousal caregivers.
World Alliance of Pitutiary Organizations
The World Alliance of Pituitary Organizations (WAPO) is a self-governed non-profit organization created in order to unite the international pituitary patient community to push for optimal treatment and care for all patients with pituitary and related conditions worldwide. The goal of our organization is to share information, work together and support all pituitary patients’ advocates all around the world.
Financial and Medical Assistance Organizations
AACE Prescription Savings Directory
The American Association of Clinical Endocrinologists put together a list of Patient Drug Assistance Organizations.
Air Care Alliance
Using their own time and general aviation aircraft, pilot volunteers from the many public benefit flying organizations help hundreds of people each month. They and many other non-flying volunteers work to transport patients in need to facilities where they are able to receive medical attention they might otherwise have to do without.
Air Charity Network
Air Charity Network is comprised of network member organizations who cover specific geographical service areas and coordinate volunteer pilot flights in the continental United States as well as Alaska and Hawaii.
Angel Flight Mid-Atlantic
Angel Flight Mid-Atlantic (AFMA) is a nonprofit 501(c)(3) organization utilizing over 550 volunteer pilots to transport patients to specialized medical care. We are a coordinating service matching volunteer pilots willing to donate their time and aircraft to the individuals in need.
PAF Co-Pay Relief (CPR) provides direct financial assistance to qualified patients, assisting them with prescription drug co-payments their insurance requires relative to their diagnosis.
Good Days exists to improve the health and quality of life of patients with chronic disease, cancer, or other life-altering conditions. At Good Days, our mission is to ensure no one has to choose between getting the medication they need and affording the necessities of everyday living.
Hospitality Homes is a nonprofit organization that provides short-term housing in volunteer host homes for families and friends of patients receiving medical care in the Boston area. Our services are free of charge and are made possible by the generosity of our volunteer hosts and supporters.
National Association of Hospital Hospitality Houses, Inc.
The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities.
National Patient Travel Center
The National Patient Travel Center provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.
NeedyMeds is a national non-profit organization that maintains a website of free information on programs that help people who can’t afford medications and healthcare costs. More than 1.3 million patients, family members, healthcare professionals, social workers and patient advocates use the NeedyMeds website each year. We regularly update data on over 9,000 assistance programs, 15,000 free/low-cost/sliding scale clinics and nearly 1,500 drug discount coupons. We also publish information about resources for specific diseases. All our information is accessible online, at no charge and without registration.
The Patient Access Network Foundation is an independent, national 501 (c)(3) organization dedicated to providing underinsured patients with financial assistance through more than 50 disease-specific funds that provide access to progressive therapies. Since 2004, PAN has provided more than 700,000 underinsured patients with over $2.5 billion dollars in financial assistance to cover out-of-pocket expenses for their prescribed treatments.
Partnership for Prescription Assistance
Our mission is to increase awareness of patient assistance programs and boost enrollment of eligible individuals. We offer a single point of access to more than 475 public and private programs, including about 200 programs offered by biopharmaceutical companies. We’ve helped millions of Americans to get prescription drugs for free or at very low cost drugs.
Patient Advocate Foundation
Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Patient Services Incorporated
PSI is the “ground breaking” 501(c)(3) non-profit, charitable organization of its kind. For nearly two decades, PSI has helped people who live with certain chronic illnesses or conditions locate suitable health insurance coverage and access ways to satisfy expensive co-payments. PSI provides assistance with the cost of health insurance premiums associated with COBRAs, State High Risk Pools, Open enrollment, Guaranteed Issue policies, HIPAA conversion policies; and prescriptions co-payments associated with private insurance as well as with Medicare Parts B and D.
For more information, visit: https://www.patientservicesinc.org/
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. All in one place.
Southwest Airlines Medical Transportation Grant Program
Through the Southwest Airlines Medical Transportation Grant Program (MTGP) we provide complimentary, roundtrip tickets to nonprofit hospitals and medical transportation organizations. Southwest allows participating nonprofit hospitals and medical transportation nonprofit organizations the freedom to determine how to distribute the tickets to patients and/or caregivers.
State Prescription Assistance Programs
There are a number of prescription drug assistance programs in each state of the U.S. Some of these programs, such as the Extra Help program, are designed to support Medicare beneficiaries, while some other available resources can also support state residents who are not enrolled in Medicare.
Health Care Tools and Resources
This site provides access to patients advocates, patient navigators, case managers, elder care advocates, home health, medical billing advocates, legal and other forms of patient assistants who may be able to help you or your loved ones manage those many health care challenges.
Centers for Medicare and Medicaid Services
Provides information about government-sponsored healthcare programs.
Home Healthcare Agencies
Home health care companies offer a wide range of skilled medical services such as nursing care, physical therapy and occupational therapy from qualified medical professionals in addition to various services from home health aides.
Internet Drug Index
National Association of Healthcare Advocacy Consultants
The National Association of Healthcare Advocacy Consultants is the professional organization for healthcare advocates that is dedicated to the improvement of patient outcomes through continuing education, promotion of national standards of practice, and active pursuit of policy change that lead to excellent person-centered healthcare.
National Library of Medicine (NLM)
The National Library of Medicine (NLM), on the campus of the National Institutes of Health in Bethesda, Maryland, is the world’s largest medical library. The Library collects materials in all areas of biomedicine and health care, as well as works on biomedical aspects of technology, the humanities, and the physical, life, and social sciences.
The Endocrine Society
The Endocrine Society is the world’s largest and most active organization devoted to the research, study and clinical practice of endocrinology.
New England Journal of Medicine Online
The New England Journal of Medicine (NEJM.org) is dedicated to bringing physicians the best research and key information at the intersection of biomedical science and clinical practice, and to presenting the information in an understandable and clinically useful format. A career companion for physicians, NEJM keeps practicing physicians informed on developments that are important to their patients and keeps them connected to both clinical science and the values of being a good physician.
The Journal of Neurosurgery
Publishes an on line peer reviewed journal called NeurosurgicalFocus. The format of this journal is to present a new “Topic” each month that contains numerous peer reviewed articles.
touchENDOCRINOLOGY – www.touchendocrinology.com
touchENDOCRINOLOGY is proud to be at the forefront of on-demand and virtual formats, pushing the boundaries for online medical education. Read the latest articles from our peer-reviewed therapy journals and unique expert insights developed for touchENDOCRINOLOGY and watch highlights and coverage from leading international ENDOCRINOLOGY congresses. touchREVIEWS in Endocrinology and US Endocrinology are peer-reviewed, free-to-access, bi-annual, journals that aims to provide insightful and topical articles relevant to the day-to-day practice of busy physicians.
Treatment Strategies – Diabetes
Treatment Strategies – Diabetes is a print report and eBook together with a supporting website, bringing influential articles and healthcare professionals together, in order to build a forum to showcase and discuss leading drugs, as well as, technological and therapeutic developments. For further information please visit the Cambridge Research website at http://www.cambridgeresearchcentre.co.uk/all-publications/diabetes/.
The U.S. Dept. of Health and Human Services, Office on Women’s Health
A Lifetime of Good Health is a new 67 page online booklet to help women of all ages understand their health needs better. This is a guide to understanding health risks at every age. This also provides an easy-to-read chart outlining medical tests and procedures recommended for women at different stages of their lives.
Water for Life
Of all the things we have ALL been told about good health habits, the one we neglect most often, relates to the drinking a daily supply of clean water!
(In most advanced countries, tapwater is just fine). This link, to a very unusual and straight forward web site, can be a boon to you, and your family’s good health. Drink and enjoy. You KNOW it is good for you.