RRP ISA Survey Results
    About Us

    (Important Disclaimer)

    About Us


    RRP ISA's original website was established in 1998. It averaged more than 1,000 hits a month. Our new website came online in January 2008. It appears to also be averaging a very high hit rate.

    We also maintain an interactive RRP Discussion (Message) Board and are in the process of creating a blog.

    Over the years, RRP ISA has  provided a high level of counseling, guidance, resource referral and case-management to many hundreds of RRP patients and scores of physicians, some of whom we have visited personally.

    We co-facilitated the 2004 RRP Focus Session in New York City, solely facilitated the 2005 RRP Focus Session in Los Angeles in conjunction with the annual American Academy of Otolaryngology (AAO) Convention, co-facilitated the RRP Focus Session in conjunction with the 2005 International Papillomavirus Society's convention in Vancouver, B.C.  RRP ISA presented at the 2007 RRP Focus Session in conjunction with the AAO Convention Washington D.C, and we are planning to facilitate a large "HPV in Head and Neck Diseases" meeting in 2008-9. [We initially also planned to facilitate the 2008 RRP Focus Session in conjunction with the 2008 AAO meeting in Chicago, but the AAO changed its eligibility-rules at the last minute regarding rooms and lodging, essentially making the meeting off-limits for patients and presenters.]

    RRP ISA maintains a large online survey and database (>130 questions) on many hundreds of patients, complete with quality of life indicators, history, physician satisfaction ratings, etc.

    We have offered several grants, including moneys to the Long Island Jewish Medical Center, to Dr. Farrel Buchinsky, Dr. Vincent Bonagura, etc.

    RRP ISA has offered financial assistance to patients who couldn't pay for treatment and we've supported Mercy Medical Airlift and sister organizations in helping to facilitate medical transportation for needy patients. We've also assisted immigration attorneys defending parents of children with RRP when the family was threatened with deportation.

    We were instrumental in getting MediCal to approve payment that it had initially declined for a controversial form of RRP treatment, and we have negotiated successfully on behalf of patients with other insurance companies as well.

    RRP ISA offered live testimony at the CDC Accreditation meeting in Atlanta on Gardasil and we were invited by Merck to give expert input on RRP in 2006.

    Since 2002, RRP ISA has participated on the RRP Task Force, and we've been very forceful in advocating for research initatives through that organization, the latest of which involves the use of artemisinin.

    We have been equally forceful in advocating for national and international educational initiatives on how HPV affects all of us (e.g., so many forms of cancer affecting both genders are caused by HPV) and how it is not just a "female disease (cervical cancer)."