Presently, there are three organizations directly involved with the study of Recurrent Respiratory Papillomatosis. All are in dire need of monetary funding and support from the RRP community and those interested in the disease. Below, I am including links, as well as the Mission/Vision Statements from each organization. Please, offer whatever support you feel you can.
The Mission of the Website is to provide a venue through which patients, families and RRP health care professionals may become better informed, and in which we can exchange information and communicate on a level playing field.
The Goals of the Website are:
1.) To create a supportive, interactive space that will reduce the sense of marginalization and isolation that often accompanies a diagnosis RRP;
2.) To inform and empower patients and families, and to teach them self-advocacy skills;
3.) To disseminate information which will raise the benchmark of expertise and accountability amongst RRP health care providers.
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 CO2 laser 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.
Our organization 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 RRP Newsletter. The newsletter includes 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:
Support & Information for RRP community -
Manage the RRP Newsletter, which will provide a forum 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 (Bennett and Powell, 1987).
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 survey 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 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 the regional information centers.
The American Laryngeal Papilloma Foundation (ALPF), a national organization, was founded in 1991 as the Christina Lazar Foundation.
ALPF is the first self-help organization created in the United States to address the needs of all juveniles, adolescents and adults afflicted with recurrent respiratory or laryngeal papillomatosis. ALPF is a 501 (C) (3) organization and an organizational member of N.O.R.D., the National Organization for Rare Disorders.
New Jersey State Department of Consumer Affairs
Registration Number 5606-05535
Federal I.D. Number 22-313-3028
I.R.S. 501-C-3
ALPF Mission
The mission of the foundation is to promote public awareness of this dreaded disease within the medical profession, self-help groups, research and foster public awareness of this rare disease.
Raise funds to help offset the costs associated with medical treatment
Provide funds to reputable organizations engaged in the research for the prevention and cure of Laryngeal Papilloma
Regional Information Sites
ALPF is composed of five regional information sites, each region has a main contact. Click here to find out more about ALPF's regions.
Calender of Events
The Foundation sponsors several yearly fund raising events in addition to direct solicitations, the proceeds of which are directed to individual patients, to research organizations, to support our free vitamin/nutrient program and to help support other organizations involved in RRP/LP public awareness.
8th Annual Dinner Dance
Friday November 5, 1999 7:30PM
New Zeris Inn, Mountain Lake, NJ. $42 donation includes sumptuous full-course dinner, fabulous prizes, and lot's of music to dance to. So please come out to support ALPF in helping those children and adults who have been afflicted by this relentless disease and whom need our help.