Advocacy for recurrent respiratory papillomatosis

Abstract

The role of an advocacy organization is particularly important for patients with orphan diseases like recurrent respiratory papillomatosis (RRP), as it is often difficult for RRP families to find knowledgeable medical personnel familiar with the care and treatment of this disease. In an effort to bridge this informational gap, provide much needed emotional support, and network the RRP community, the RRP Foundation (RRPF) was founded in late 1992. Since its infancy, the RRPF’s advocacy efforts have built an epidemiological database of patient information via a comprehensive survey system and have expanded to provide a variety of internet platforms for informational exchange, including a website, an email LISTSERV, and an RRPF Facebook page. Recently, advocacy has included a focus toward the needs of those afflicted with the most life-threatening aspect of RRP, pulmonary papillomatosis. With the goal of encouraging new research approaches to find effective ways to treat pulmonary RRP, the Pulmonary Papillomatosis Research Initiative (PPRI) was launched in 2009 and through the end of 2014 has funded several promising studies. To compliment the PPRI, the RRPF is also forming a pulmonary papillomatosis working group. Moving forward, the RRPF will strive to create more public awareness of RRP and other HPV-related disease, which hopefully will lead to a significant increase in HPV preventative vaccination compliance in children and the eventual elimination of RRP in future generations.