ThyCa Supports Rare Disease Day® and Global Movement to Raise Awareness for Rare Diseases
February 2016—ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 29. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.
ThyCa, founded in 1995 and advised by numerous thyroid cancer experts, provides free support services and resources to patients, caregivers, and professionals worldwide; sponsors events including the annual International Thyroid Cancer Survivors’ Conference and Thyroid Cancer Awareness Month, and sponsors thyroid cancer research grants open to researchers around the world.
Rare thyroid cancers include anaplastic thyroid cancer, medullary thyroid cancer, and variants of papillary and follicular thyroid cancer such as Hurthle cell cancer, tall cell, insular, diffuse sclerosing, and others. In addition, thyroid cancer is rare in children and teens.
ThyCa’s web site has free handbooks on each type of thyroid cancer, as well as numerous videos with thyroid cancer experts, plus detailed information and more resources for all thyroid cancer types.
ThyCa is supporting Rare Disease Day through informative articles sent to 65,000 people in its weekly newsletter, plus information on its web site and in social media messages.
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.
Rare Disease Day takes place every year on the last day of February. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®.
For free materials, information, support services, and educational events about rare thyroid cancers, visit ThyCa’s website, www.thyca.org. For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org.