When the NVA started, there was virtually no public information on vulvodynia. Fittingly, the organization’s first priority was to develop educational materials for both the patient and medical communities. The NVA drafted an informative brochure and began distributing it to health care providers and patients who contacted the organization. The NVA also created the NVA News, its highly praised informative newsletter published three times yearly. With nearly 40 issues in print to date, the newsletter contains articles written by experts in the field who provide a wealth of information on the diagnosis and treatment of vulvodynia. It also features news articles summarizing the latest research findings, as well as events on Capitol Hill aimed at increasing federal funds for research.

The NVA firmly believes that the more patients know about the diagnosis and treatment of the condition, the better equipped they will be to discuss their options with their health care providers. In addition, because the etiology of the condition is poorly understood and likely multifactorial, the organization’s philosophy is to present information on all types of medically responsible treatment and encourage women to work as a team with their providers in order to decide which treatment options are most appropriate for them.

The NVA’s next priority was to establish a national support network modeled upon the Washington, DC, area support group. Many women find that mutual support is both a good source of information and the best way to overcome the emotional isolation that often results from having vulvodynia. Today, the NVA has nearly 100 support leaders in place throughout the United States, Canada, and a handful of other countries, including Israel and Australia. The role of the NVA support leaders is to accept phone calls and emails from affected women in their geographic area. In some cities, leaders organize regular support group meetings or communicate online with their group members. The purpose of the groups is to provide emotional support, host speakers from different medical specialties, and raise public awareness by hosting local events and reaching out to media professionals. In addition, the NVA refers interested women to online e-groups and bulletin boards that can provide support to those who are incapacitated, prefer online communication, or need support in between their local group meetings.

When the NVA started receiving calls, the first question women tended to ask was, “Can you give me the name of a health care provider in my area?” Although the NVA initially did not plan on offering this service, it was apparent that providing this information was essential for most patients. Therefore, the NVA began to gather names and contact information of doctors, nurse practitioners, physical therapists, and other health care providers across the country familiarwith vulvodynia. The NVA now main-tains the most comprehensive database of health care professionals interested in treating vulvar pain disorders in the United States and Canada; the list also contains information for health care providers in several other countries. In an effort to assist women in making more informed choices about their health care, the NVA has recently expanded the database to include information on specialty, type of practice, average number of vulvodynia patients seen monthly, percentage of the practice devoted to vulvar disorders and chronic pain, and degree of involvement in vulvodynia research.

Within a year of its incorporation, NVA headed to Capitol Hill to educate members of Congress about vulvodynia and promote the urgent need for federal research funding. As a result of numerous Congressional meetings and briefings that have taken place over the years, substantial progress has been made. Senator Tom Harkin (D-IA), a well-known women’s health advocate, has been the most prominent champion, ensuring that language on vulvodynia has been included in the National Institutes of Health (NIH) appropriations report every year since 1998. The FY2008 NIH appropriations report contained the following language: