ATA Alliance for Thyroid Patient Education
American Thyroid Association® , Graves' Disease and Thyroid Foundation, the Light of Life Foundation, ThyCa: Thyroid Cancer Survivors Association, Bite Me Cancer,MCT8-AHDS Foundation, Thyroid Cancer Alliance, Thyroid Cancer Canada and Thyroid Federation International
The goal of our organizations is to provide accurate and reliable information for patients about the diagnosis, evaluation and treatment of thyroid diseases.
ATA® ALLIANCE FOR PATIENT EDUCATION – WHO WE ARE
American Thyroid Association® members have long served as advisors, consultants, and speakers for thyroid patient support organizations. As an association, ATA® works closely with other highly regarded professional and patient education organizations to maintain the highest level of reliable information to the public and patients.
Other Patient Support Links
Professional Organizations Providing Information for Patients
American Academy of Otolaryngology-Head and Neck Surgery
American Association of Clinical Endocrinologists
American Association of Endocrine Surgeons
FDA- New Patient Engagement Collaborative, Call for Nominations
International Thyroid Oncology Group
The Society of Nuclear Medicine and Molecular Imaging (SNMMI)
Founded in 1990, the Graves’ Disease Foundation offers support and resources to Graves’ disease patients, their families, and health care professionals. Their mission is to find the cause of and the cure for Graves’ thyroid disease through research, to improve the quality of life for persons with Graves’ disease and their caregivers and to educate persons with Graves’ disease, their caregivers, healthcare professionals, and the general public about Graves’ disease and its treatment. The web site features a monitored bulletin board.
Our mission is to fight cancer through research, education and inspiration.
Bite Me Cancer was formed as a nonprofit foundation in September, 2010, by Nikki Ferraro, who was 17-years old at the time. Nikki was diagnosed with Sporadic Medullary Thyroid Cancer in April 2010 when she was a junior at Chantilly HS in Virginia. Nikki’s goals for Bite Me Cancer are focused on 2 large projects: (1) is to support teenagers battling all cancers by providing them with Teen Support Bags containing items specifically chosen for teenagers to use and (2) raising research funds and awareness for thyroid cancer.
Bite Me Cancer has shipped over 5,700 bags to 115 hospitals across the United States as of January 2019. With the Bite Me Cancer thyroid cancer research program, the foundation has funded 6 grants through a collaboration with the American Thyroid Association as of January 2019.
The Light of Life Foundation, founded in 1997, is a nonprofit organization that strives to improve the quality of life for thyroid cancer patients, educate the public and professionals about thyroid cancer, and promote research and development to improve thyroid cancer care.
ThyCa: Thyroid Cancer Survivors’ Association, Inc.
ThyCa: Thyroid Cancer Survivors’ Association, Inc., founded in 1995, is an international nonprofit organization, guided by a medical advisory council of renowned thyroid cancer specialists, offering support and information to thyroid cancer survivors, families, and health care professionals worldwide. ThyCa: Thyroid Cancer Survivors’ Association, Inc. (ThyCa), through a collaboration with the American Thyroid Association, has provided funding in support of 72.5 special research grants focused on thyroid cancer and medullary thyroid cancer since 2003.
Thyroid Cancer Canada is a non-profit organization founded in 2000. The organization works towards creating an environment in which people who are dealing with thyroid cancer, especially the newly diagnosed, are met with support and information. Their goals & objectives include facilitating communication among thyroid cancer patients, providing credible information about the disease, providing emotional support, and assisting thyroid cancer patients with voicing their needs to health care professionals and those who are responsible for health care policy.
Thyroid Federation International (TFI) was established in Toronto in 1995. Thyroid Federation International aims to work for the benefit of those affected by thyroid disorders throughout the world by providing a network of patient support organizations.
6066 Leesburg Pike Suite
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The American Thyroid Association® (ATA) is dedicated to transforming thyroid care through clinical excellence, education, scientific discovery and advocacy in a collaborative community. ATA®is an international professional medical society with over 1,700 members from 70 countries around the world. Celebrating its 96th anniversary, the ATA® delivers its mission — transforming thyroid care through clinical excellence, education, scientific discovery and advocacy in a collaborative community — through several key endeavors: the publication of highly regarded professional journals, Thyroid®, Clinical Thyroidology®, and VideoEndocrinology™; annual scientific meetings; biennial clinical and research symposia; research grant programs for young investigators; support of online professional, public and patient educational programs; and the development of guidelines for clinical management of thyroid disease and thyroid cancer. The ATA® promotes thyroid awareness and information through its online Clinical Thyroidology®for the Public (distributed free of charge to over 12,000 patients and public subscribers) and extensive, authoritative explanations of thyroid disease and thyroid cancer in both English and Spanish. The ATA® website www.thyroid.org serves as a bonafide clinical resource for patients and the public who look for reliable information on the Internet.
The Thyroid Cancer Alliance is an international network of national thyroid cancer patient support organisations and/or thyroid patient support groups, dedicated to working together towards providing support, information and encouragement to patients and their families. Its activities include promoting education and awareness of thyroid cancer to the general public and medical professionals; bringing together leaders of national thyroid and/or thyroid cancer support groups so that they can share information and learn from each other’s experiences; and promoting thyroid cancer awareness all over the world through participation in thyroid cancer awareness month (September). It also participates in umbrella organisations for cancer patient advocacy such as EURORDIS, Workgroup of European Cancer Advocacy Networks (WECAN), and the European Cancer Patient Coalition (ECPC). The TCA will be displaying the latest editions of its patient materials on advanced thyroid cancer, in English and Spanish at the ATA in Washington DC.
MCT8-AHDS was discovered in 1944 by William Allan, Florance Dudley and Nash Herndon. They have studied a familial intellectual disability with motor abnormalities in boys. Almost half a century later, in 1990, the first genetic mapping was made. MCT8-AHDS was then one of the first genetic syndromes to be mapped. Fourteen years later, in January and October 2004 independently by two researchers , the first connection between the Monocarboxylate transporter 8 (MCT8) and the Allan-Herndon-Dudley syndrome was made.
MCT8-AHDS Deficiency also known as Allan-Herndon-Dudley syndrome is a genetic X-link disorder that only affects boys. MCT8 (Monocarboxylate transporter) is the protein product of the SLC16A2 gene and is one of the protein substances located on cell membranes that are responsible for the transport of thyroid hormones into the brain. Thyroid hormones are particularly important to proper brain development during embryo and early childhood stages of a child’s life. Lack of thyroid hormones in the brain during these periods is associated with mental delay. Even though only boys present symptoms and can MCT8-AHDS patients, girls may carry the mutation as well without presenting any symptoms. That is due to the fact that girls have two X chromosomes. If one chromosome is affected, the body may still use the correct copy from the second one.
Additional Patient Education and Resources
This collection features commentaries, interviews, and slideshows developed by Medscape in collaboration with the American Thyroid Association. It is designed to advance the understanding of thyroid disorders and thyroid cancer, and to offer guidance to physicians, nurses, pharmacists, and the entire patient care team.
Magic Foundation (support and education to families of children with growth disorders)
MTC Educate – A Medullary Thyroid Cancer Education Website
NCCN Guidelines for Patients®
NIH (Government) Educational Information
Clinical Center, National Institutes of Health
National Cancer Institute, National Institutes of Health
Talking to Your Doctor Website from NIH