The Recurrent Respiratory Papillomatosis Foundation, founded in 1992, 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 and a major component of the network is the RRP Foundation listserv. The RRPF’s main publication, the RRP Newsletter, along with the website and the listserv, 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:
c/o Bill and Marlene Stern
P.O. Box 6643
Lawrenceville, NJ 08648-0643
Our Board Members and Officers
Director of Research, President and Assistant Secretary
Director of Finances, Treasurer
Director of Social Media, NORD Representative
Director of Legal, Secretary
Former President and Director (passed away September 2015, age 31)