Patient Support and Advocacy Organizations

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. 

Allsup Inc.

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.
http://www.aamftca.org/

American Brain Tumor Association

The American Brain Tumor Association is a not-for-profit, independent organization dedicated to

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.

 Attention Deficit Disorder Resources

The website of Attention Deficit Disorder Resources has over 150 articles written by national ADHD authorities as well as adults with ADHD.

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.

www.braintumour.ca/

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

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.

CancerNet

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.

Chordoma Foundation

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. 

ChronicBabe.com

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:
http://www.bulimia.com/
http://www.nationaleatingdisorders.org/
And for our international visitors, this following site is filled with great info:
http://www.eatingdisorderexpert.co.uk/home.htm

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

Families USA is a nonprofit advocacy organization that offers resources on finding, choosing, and using health coverage.
http://www.familiesusa.org

German Acromegaly Register

Head for the Cure Foundation

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/ 

Healthfinder.gov

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.
http://www.healthfinder.gov/

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.

Medscape Today

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.

http://www.braintumor.org
E-mail: [email protected]

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

Patient Services
800 934 2873

Toll-free
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

Goals:

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.
http://www.pituitaryresearch.com.au/

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

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.
http://www.wellspouse.org/

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.
http://www.wapo.org/

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