Description and Mission
Recurrent Respiratory Papillomatosis (RRP) is a disease in which tumors grow inside the larynx, vocal cords and trachea. It affects both children and adults. Research has determined that the Human Papilloma Virus (HPV), is present in these respiratory tumors. These growths are often associated with two specific types of the virus (HPV6 and HPV11) which are also found in genital and cervical warts.
There is no known cure for RRP, with surgery under general anesthesia most often being the method of controlling theses growths. If left untreated these respiratory tumors will continue to grow, blocking the patient’s airway with suffocation being the likely result.
The Recurrent Respiratory Papillomatosis Foundation was created to provide patient/family support, serve as an information resource for patients and practitioners, promote public awareness, and aid in the prevention, cure and treatment of RRP by encouraging and participating in promising RRP research studies..
The RRP Foundation is primarily focusing on the networking of the RRP community, including patients (both juvenile and adult), families, medical practitioners and researchers. The nucleus of the network is the RRPF website (rrpf.org) and a major component of the network is the RRP Foundation listserve. The RRPF's main publication, the RRP Newsletter, along with the website and the listserve, include support network information, individual RRP patient case histories, current adjunct therapy information and developments with regard to RRP (i.e., new treatments and research directed to both practitioners and patients), plus any additional information that might help further understanding and/or awareness with regard to this disease.
The concerns and objectives of the RRP Foundation are as follows:
Support Information for RRP community -
Manage the RRPF website, which, in a timely manner, keeps the RRP community abreast of new developments (i.e., clinical trials, treatments, research, etc.) and also serves as a major RRP information resource.
Provide a forum for information exchange and putting patients in touch with each other - RRPF Listserve.
Periodically publish the RRP Newsletter which includes articles about RRP patients, adjunct therapies, RRP research studies, plus other RRP related information and happenings.
Develop a comprehensive bibliography of RRP references - RRP Reference Service
Inform the RRP community of local information centers and support groups.
Inform patients/families and medical practitioners of available treatment options.
Maintain a database of RRP patient information based on the RRPF online survey.
Keep a registry of local physicians who have had significant experience in treating RRP.
Enhance awareness of RRP at the local and national level
Educate the medical community on RRP to facilitate early diagnosis and the implementation of risk reduction measures.
Gynecologists and obstetricians should be aware of the connection between genital HPV and RRP, and their affected patients should be informed, as it is speculated that C-sections might possibly reduce the incidence of RRP (Shah et al., 1998).
Actively participate as a member of the RRP Task Force to develop a comprehensive epidemiological database and national registry of all RRP patients.
Enhance public awareness through video, internet and media.
Recruit research funding from government agencies as well as corporate and business communities.
The RRP Foundation is a completely volunteer organization, comprised of RRP families, practitioners researchers and friends. We very much appreciate your help and support in creating greater awareness so that RRP gets the attention it deserves. If you would like more information about Recurrent Respiratory Papillomatosis or would like to donate and become a subscriber to the RRP Foundation, please email, call or write the RRP Foundation, c/o Bill and Marlene Stern, P.O. Box 6643, Lawrenceville, NJ 08648-0643, Tel.: 609-530-1443, or contact any of our regional information/support centers.
