Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

Important Survey from NVA! June 11, 2013

Dear NVA Friend,

 

Over the last decade, there has been a growing recognition of the important role that patients play in guiding the research and development of new treatments for various disorders, including vulvodynia. 
 
Currently, the NVA has several opportunities to communicate the experiences, needs and preferences of women and girls with vulvodynia to federal health agency directors and biomedical industry leaders, and we’d appreciate your help. If you are a woman or girl who has been diagnosed with vulvodynia and has tried at least one therapy, please take 5-10 minutes to complete a brief survey about your treatment experiences and what you consider to be most important in developing new and effective treatments for the disorder.
 
The collected information will be used solely for awareness and educational purposes, and your contact information will not be shared.

  

To complete the brief survey, please visit: https://www.surveymonkey.com/s/3YZ3VTP.

 

Thank you in advance!

 

chris signature  

 

Christin Veasley

NVA Executive Director

 

 

 
Contact Us
 National Vulvodynia Association
PO Box 4491, Silver Spring, MD 20914-4491
301-949-5114 (phone) | 301-299-3999 (fax) | www.nva.org 
Support the NVA
Your support of the NVA’s mission is vital. Founded in 1994, the NVA is the only non-profit organization that serves women and girls affected by vulvodynia, medical professionals who care for sufferers, and scientists who conduct research on the disorder. The organizationdirectly funds critical vulvodynia research, advocates for increased federal funding of vulvodynia research and awareness programs, supports the establishment of vulvar pain clinics, fosters the professional growth of those dedicated to the care and/or research of vulvodynia, develops educational programs for patients and medical professionals, provides supportive services to affected women and works to increase public awareness of vulvodynia. To make a 100% tax-deductible donation, please visit https://www.nva.org/join_ donate_renew.html . For more information, please visit www.nva.org.  
 

Help NVA Collect Much-Needed Information on Treatment Effectiveness April 23, 2012

Help NVA Collect Much-Needed Information on Treatment Effectiveness

First Multi-Site Treatment Registry to Enroll Additional 350 Women in 2012

NVA is committed to continuing its support of the first National Vulvodynia Treatment Outcomes Registry, because due to a lack of research, clinicians and patients have little to no scientific evidence on which to base important medical decisions. The only way that women will ever be informed of the treatment(s) proven effective for their specific vulvodynia subtype – thereby decreasing the time between diagnosis and initiation of effective treatment – is through this type of research! Please help us collect this vital data to help women who are currently suffering as well as those who will come after us.

Over the next 10 months, an additional 350 women age 21 and older will be able to participate in this important study. Registry investigators collect a wealth of neurological, infectious, immunological and genetic data from participants at several time points after initiating treatment – all of which will be correlated to the effectiveness of different vulvodynia therapies. This study will not only lead to the identification of factors that can predict treatment effectiveness, but will help us understand the underlying mechanisms associated with different vulvodynia subtypes. Participation is voluntary, does not include any experimentation and does not change women’s treatment recommendations.

To speak to the Registry’s Research Coordinator Katy Capote about participating at any of the sites, please call 407-303-2721 or send an email to katerina.capote@flhosp.org.

Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.

To read more about the project, including information on the Registry Investigators, please visit NVA’s web site.

Registry sites are located in:

Little Rock, Arkansas

Los Angeles, California

Denver, Colorado

Fort Lauderdale, Florida (coming soon)

Orlando, Florida

Annapolis, Maryland

New York City, New York (coming soon)

Akron, Ohio

Pittsburgh, Pennsylvania (coming soon)

Washington DC

 

International Women’s Day February 23, 2009

Filed under: news,VVSN events — Katie E @ 3:51 am

March 8 is International Women’s Day! Portland is celebrating at PSU and we will have a table. You can check their schedule and events here. Come check us out or look for other Women’s Days events happening in your area.