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 being the accepted 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 nuclei of the network is the RRP Newsletter. and the RRPF website. The newsletter and website include support network information, statistics and activities, individual RRP patient case histories, developments with regard to RRP (i.e., 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:
?br> ?Support Information for RRP community -

Manage the RRP Newsletter and RRPF website, which will provide forums for information exchange, support and networking.

Provide a vehicle for putting patients in touch with each other - RRP Patient/Family Directory.

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.

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 part of the Task Force on Recurrent Respiratory Papillomas, in collaboration with CDC (Centers for Disease Control and Prevention), to develop a comprehensive epidemiological database and national registry of all RRP patients.

Enhance public awareness through media submissions and articles.

Develop a national electronic mail network for RRP.

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 call or write the RRP Foundation, c/o Marlene and Bill Stern, P.O. Box 6643, Lawrenceville, NJ 08648-0643, Tel.: 609-530-1443, or contact any of our regional information/support centers.