Recurrent Respiratory Papillomatosis Foundation

Recurrent Respiratory Papillomatosis Foundation Please enroll in the RRP Registry. Who gets RRP? RRP occurs in both children and adults. However, even among this group the disease is still rare. Join with us!

The RRP foundation was created to provide patient/family support, serve as an information resource for patients and practitioners, promote public awareness, aid in the prevention, and cure and treatment and research. In children, JORRP (juvenile onset RRP) is almost always diagnosed by age ten and usually before the age of five, showing no sexual preference. Statistics indicate that first-born chi

ldren delivered vaginally to young mothers (under the age of 20) with active condyloma during pregnancy, are at greatest risk. The distribution of diagnosis ages is much broader for adult onset RRP (AORRP) than for children, as RRP may present at any age with some preference for occurrence seen in adult males in their 30s. Although there is now an RRP registry documenting juvenile RRP cases at 23 medical centers in the U.S. (managed by the Centers for Disease Control), there is still a lack of a comprehensive epidemiological database of RRP patient information. Hence, it is difficult to determine incidence and prevalence statistics with a high degree of confidence. The best estimate of RRP incidence and prevalence in the U.S. is based on a study conducted in 1995 by the RRP Task Force. Their projected totals for recurrent respiratory papillomas among children were 2354 new cases per year, with a 95% confidence interval (CI) ranging from 1448 to 3260, and 5970 active cases, with a 95% CI ranging from 3465 to 8474. The projections for AORRP, were 3623 new cases per year (95% CI, 2359 to 4887) and 9015 active cases (95% CI, 6435 to 11,591). These estimates indicate an incidence among children of about 4.3 per 100,000 and among adults of about 1.8 per 100,000. https://donate.rrpf.org/edens-story/

Official RRPF Support page:
https://www.facebook.com/groups/56933149473/

RRP Awareness Day is June 11, and as we count down to it this week we wanted to share a little about what this foundatio...
06/01/2026

RRP Awareness Day is June 11, and as we count down to it this week we wanted to share a little about what this foundation actually does and what your support makes possible.

We’re a lean organization on purpose. We keep overhead low so that donations go where they’re needed most: educating patients and families, training and supporting clinicians, advancing advocacy at every level, and working directly with pharmaceutical companies to push treatment options forward.

If you’ve ever thought about giving, even just a few dollars a month, we invite you to make a gift today 👉️ https://buff.ly/BgG8kD3

SAVE THE DATE FOR D.C.!Our next Patient Gathering is set for July 11 at 1:00 p.m. at Copper Canyon Grill in Downtown Sil...
05/20/2026

SAVE THE DATE FOR D.C.!

Our next Patient Gathering is set for July 11 at 1:00 p.m. at Copper Canyon Grill in Downtown Silver Spring, Maryland. This lunch is hosted by the RRPF and DC area Patient Advisory Council member, Jasity Rush. We hope you will join us.

There is something really special about being in a room with people who understand. Whether you are newly diagnosed or have been living with RRP for years, spending time with others who share your experience can be incredibly grounding. These gatherings are a chance to swap practical tips, talk honestly about the challenges of managing this disease, find some comfort in knowing you are not alone, and simply enjoy a good meal and good company. Caregivers are a big part of these conversations, too!

Our 2026-2027 Patient Gatherings are sponsored exclusively by Precigen. More details and registration information will be available soon. Stay tuned!

RRPF President Kim McClellan recently attended the 2026 Bridge2AI-Voice AI Symposium and Hackathon, held May 4-6 in St. ...
05/18/2026

RRPF President Kim McClellan recently attended the 2026 Bridge2AI-Voice AI Symposium and Hackathon, held May 4-6 in St. Petersburg, Florida, and we are thrilled to share what this event means for the RRP community.

The Voice AI Symposium is one of the only international conferences focused entirely on voice biomarkers and their role in healthcare. This year's three-day event brought together researchers, clinicians, entrepreneurs, and industry leaders to explore how voice data can be used to detect, monitor, and predict a range of medical conditions. The symposium featured panel discussions, hands-on workshops using the Bridge2AI-Voice dataset, a tech fair showcasing the latest tools in the field, and a full-day Hackathon where participants worked together to solve real-world healthcare challenges using voice AI.

Through our partnership with the University of South Florida and the NIH-funded Bridge2AI-Voice project, RRP patient voices are now part of the research being discussed at events like this one. AI trained on voice data may one day help detect papilloma regrowth earlier, potentially reducing the number of surgeries patients face over a lifetime. Kim's presence at the symposium reflects our commitment to making sure the RRP community has a seat at the table and that our voice is heard.

RRP Awareness Day is coming soon, and we want your voice at the center of it. This year, we’re gathering stories and voi...
05/14/2026

RRP Awareness Day is coming soon, and we want your voice at the center of it. This year, we’re gathering stories and voices from patients, caregivers, and healthcare providers to share across our platforms on June 11. Your personal experience will help raise awareness in an authentic, meaningful way. Please complete your submission by May 20.

Share a pre-recorded video or schedule a brief video interview: https://buff.ly/oB0EjhB

Submit a quote or image: https://buff.ly/gUjVBEq

The Mission Depends on You 💙The Recurrent Respiratory Papillomatosis Foundation is constantly at work advocating for you...
05/06/2026

The Mission Depends on You 💙

The Recurrent Respiratory Papillomatosis Foundation is constantly at work advocating for you — the patients, the families, and the caregivers. Whether it's raising our voices to drive critical change at the government level or sharing the patient perspective to improve care and treatment, we're out to create a brighter future for every RRP patient.

But that work depends on you. The RRPF depends on grants and donor support to continue this important work. Become a monthly supporter today. Your gift today — of any size — makes a meaningful impact and keeps the momentum going.

Please, give today 👉️ https://buff.ly/rPR9blq

MUST WATCH! 👀In this episode of the BackTable ENT podcast, Dr. Aaron Friedman and guest host Dr. Stephen Schoeff dive in...
05/03/2026

MUST WATCH! 👀

In this episode of the BackTable ENT podcast, Dr. Aaron Friedman and guest host Dr. Stephen Schoeff dive into a significant change in how we treat HPV: immune-directed therapy that targets HPV 6 and 11.

Dr. Friedman talks about the recent FDA approval of the Precigen product PAPZIMEOS (which is set to be available in August 2025). This is a therapeutic vaccine designed to help your body make T cells that specifically target HPV. In clinical trials, about half of the adults who received it didn’t need any further surgeries in the year after treatment, and many kept feeling better for years. The discussion also touches on the usual ways we manage HPV, including using drugs like bevacizumab, getting vaccinated against HPV, and how we’re changing the way we treat adult RRP.

👉 https://www.youtube.com/watch?v=FT5SLeJv75Q

RRPF president, Kim McClellan, recently attended the Common Ground Dinner hosted by the Chan Zuckerberg Initiative's bio...
04/28/2026

RRPF president, Kim McClellan, recently attended the Common Ground Dinner hosted by the Chan Zuckerberg Initiative's biomedical research organization, Biohub.

Leading experts across research, clinical care, industry, technology, and patient advocacy converged around a shared theme: many rare diseases, including recurrent respiratory papillomatosis, are driven by a lesional microenvironment characterized by persistent, dysregulated inflammation that results in local immunosuppression.

Kim was honored to participate and share insights on RRP, where elevated inflammatory markers (cytokines and chemokines) coexist with immunosuppressive signals and cells — helping to identify meaningful overlap with other rare disease communities, researchers, and industry partners.

These discussions underscored a critical need to better understand and therapeutically redirect inflammation that, rather than promoting immunity and clearing disease, enables persistence and progression.

COMMUNITY MATTERS 💙 🩵This past Saturday, RRPF, along with our gracious host Craig Mabie, welcomed patients and caregiver...
04/26/2026

COMMUNITY MATTERS 💙 🩵

This past Saturday, RRPF, along with our gracious host Craig Mabie, welcomed patients and caregivers to the historic Colonial Inn in Concord, MA. We were even joined by a patient who traveled from Alaska!

For many attendees, it was their first time meeting another RRP patient. These dinners are designed to foster community, create a sense of belonging, and remind patients and caregivers that they are not alone in their RRP journey.

A special thank you to our dinner sponsor, Precigen.

RRPF President, Kim McClellan, will be a featured speaker in an upcoming Global Action on Men’s Health webinar focused o...
04/22/2026

RRPF President, Kim McClellan, will be a featured speaker in an upcoming Global Action on Men’s Health webinar focused on HPV. The session, HPV, Warts and RRP, will take place on Tuesday, April 28, at 10:00 a.m. ET in support of World Immunization Week. This global conversation brings together clinicians, researchers, and advocates to shed light on HPV-related conditions that are often overlooked.

Learn more and register today 👉️ https://gamh.org/webinars

Exciting news from the NIH.
04/13/2026

Exciting news from the NIH.

Smaller gene-editing system could expand treatment options for cancer, ALS and other diseases.

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