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Endometriosis is a disease in which the tissue that lines the uterus is found to be growing outside the uterus. Endometriosis affects a staggering 70 million women and girls worldwide, and there is no definitive cure. The average time between the first symptoms and diagnosis is still a shocking nine years, and a woman or girl will go through upwards of five physicians before her pain is taken seriously. The Endometriosis Research Center (ERC) strives to improve the lives of all those suffering with the disease.
Founded in early 1997, the ERC addresses the growing international need for endometriosis research, education, policy, patient advocacy, awareness, and support. With headquarters located in Florida, the organization hosts a virtual network of staff and volunteers around the world who help implement the ERC's various programs in the online and local communities on a global basis. The ERC maintains and offers a vast database of accurate materials on every aspect of endometriosis for practitioners, researchers, patients, and their loved ones. Additionally, the ERC has collaborated on several books, publications, and videos pertaining to the disease.
On the clinical front, the ERC is actively involved in ongoing disease research, ranging from clinical trials on proprietary new treatments to participation in genetic research studies. The ERC was involved in the pilot study conducted to validate the world’s first self-collection kit and testing method to provide a screening system for endometriosis. The preliminary results are promising, particularly for undiagnosed women and adolescents, and this novel work is now an area of focus for the global biotech community. Currently, the ERC is in the process of recruiting sites to participate in a groundbreaking endometriosis biomarker study on behalf of one of the world’s leading clinical diagnostic corporations.
The ERC is also a leader in endometriosis awareness initiatives, helping to raise recognition about issues pertinent to endometriosis education and research at the governmental level. The most gratifying success came when the 107th Congress of the United States passed Res. 291 formally proclaiming March as National Endometriosis Awareness Month.
The ERC provides a varied support network, hosting many regional support and education groups as well as the largest online endometriosis support group, with nearly 4,000 participants from around the globe. The ERC offers a "Girl Talk" Program, a specific support and education program tailored to meet the needs of young women under the age of 25 who have, or think they may have, the disease. To address the unique perspective of, and offer specifically tailored materials to, the underserved community of lesbians with endometriosis, the ERC also implemented the "Women 2 Woman" program a decade ago.
For more information, visit www.endocenter.org.
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