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About UsPrograms & ActivitiesNewsletter (NVA News)The NVA newsletter, featuring articles written by vulvodynia experts, is packed with information on diagnosis, treatment and research. These newsletters are directed at both vulvar pain sufferers and health care professionals. Patient BookletsNVA has developed four educational booklets for women with vulvodynia and their loved ones. Written from both the gynecological and chronic pain perspectives, I Have Vulvodynia – What Do I Need to Know?, features important self-help strategies for alleviating vulvar pain and maintaining sexual intimacy. It will help women with vulvodynia to make educated decisions about their health care and build strong partnerships with their health care providers. Vulvodynia, Pregnancy and Childbirth, the first resource on the subject written specifically for women with vulvodynia, includes information on conception through the postpartum period. In addition to describing alternate methods of conception and childbirth options, it offers advice on minimizing vulvar pain during pregnancy. My Partner Has Vulvodynia – What Do I Need to Know? gives partners a better understanding of vulvodynia and the challenges of living with it. In addition to encouraging partners to be supportive, it discusses the impact of vulvodynia on relationships and offers advice on maintaining sexual intimacy. How to Apply for Disability Benefits guides women with vulvodynia who cannot continue to work through the process of applying for disability benefits from the Social Security Administration. Healthcare Provider ReferralsThe NVA maintains a comprehensive database of healthcare professionals that treat vulvar pain disorders. In an effort to assist women in making informed choices about their healthcare, the NVA expanded the information contained within its healthcare provider referral database in 2005. Patient Health SurveyThe NVA has received and analyzed more than 2,000 health surveys from vulvodynia patients in the US. The survey asks questions about diagnosis, treatment, quality of medical care, pain severity and quality of life. The NVA continues to collect survey responses from vulvar pain sufferers across the world to gain a better understanding of possible etiologies, treatment success (and failure) and quality of life issues affecting women with vulvodynia. Support NetworkThe NVA maintains a support network of approximately 100 contact leaders across the United States, Canada and a few other countries. The NVA communicates with its support leaders and provides them with up-to-date information. The leaders serve as resources, receiving phone calls from other women in their region, and in some cases, organizing support group meetings. Public AwarenessThe NVA strives to increase public awareness and understanding of vulvodynia. Women need to know that the NVA exists to answer their questions, help them find knowledgeable medical professionals and provide them with compassionate support. To this end, NVA provides extensive information to health care reporters, editors and producers who are willing to cover the topic in their venue. Vulvodynia has been featured in several popular magazines such as Marie Claire, Good Housekeeping and Health; it has also been featured in major newspapers, such as the Chicago Tribune, and on a primetime CBS television show, The Body Human. In 2001, vulvodynia was also featured on both HBO’s Sex And The City and The Oprah Winfrey Show. Medical ResearchThe NVA is dedicated to promoting, and providing funding for, vulvodynia research. To date, the NVA has disseminated over $250,000 for medical research and continues to fund deserving studies. If you are interested in donating to our Medical Research Fund, please contact Chris Veasley at Career Development AwardIn an effort to encourage interested faculty to pursue their clinical and/or academic interest in vulvodynia, in 2006 the NVA created the Dr. Stanley C. Marinoff Vulvodynia Career Development Award. To date, the NVA has awarded $15,000 and will continue to give these grants on an annual basis. If you are interested in making a donation for this purpose, please contact Chris Veasley at 401-398-0830. Research AdvocacyIn order to promote interest in vulvodynia and establish research directives, the NVA worked with the National Institutes of Health in 1997 and 2003 to organize conferences on the disorder. As a result of these conferences and NVA’s urging, in 2000 the U.S. Congress directed NIH to fund vulvodynia research. For the first time in history, NIH funded vulvodynia studies at major universities, including Harvard, Yale, Robert Wood Johnson Medical School and the University of Michigan. In recent years, the NIH also funded research projects at Johns Hopkins Medical School, the University of Rochester Medical Center and the University of Iowa Medical School. Medical Professional EducationTo educate medical professionals on the treatment of vulvar pain, the NVA exhibits and organizes symposia at major medical conferences across the US. We also distribute complementary educational materials and patient brochures to medical practitioners. NVA has developed several new initiatives to educate the medical community. The first is the NVA Research Update electronic newsletter that is disseminated quarterly. The purpose of this e-newsletter is to keep members of the medical community informed about the latest research published in medical journals and presented at scientific meetings. The NVA also has created a teaching program for healthcare professionals. The first edition, released on CD-Rom, was disseminated to OB/GYN department heads and residency directors at 300 medical institutions in the US and Canada. The second edition, released in 2007, is now CME/CE accredited and available online. Additional information on this program can be viewed here. The National Vulvodynia Association (NVA) is an educational, nonprofit organization founded to disseminate information on vulvodynia. The NVA recommends that you consult your own health care practitioner to determine which course of treatment or medication is appropriate for you. Last Updated on July 7, 2010 |
