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/

What does treatment mean to someone living with RRP?A new study explored the experiences of 24 patients who had received...
08/10/2026

What does treatment mean to someone living with RRP?

A new study explored the experiences of 24 patients who had received both surgery and Systemic bevacizumab treatment for RRP. Patients reported improvements in voice, breathing, swallowing, pain, and overall quality of life while receiving bevacizumab. Many also felt more optimistic and less fearful about their disease. In fact, 83% of participants reported a better quality of life with bevacizumab than with surgery. These findings highlight the importance of listening to patients and understanding how treatment impacts not just the disease, but everyday life. đź’™

Read the full study 👉 https://f.mtr.cool/aplzenkmha

Together, we can shape the future of RRP and ensure patients have access to the care they need. Your donation helps us p...
08/06/2026

Together, we can shape the future of RRP and ensure patients have access to the care they need. Your donation helps us provide education, advocacy, and trusted resources… Giving hope to those who need it most.

Make a difference today đź’™ Link in the Comments

We're Stronger Together đź’ŞThis past Saturday, we hosted a patient gathering for RRP patients and families in Silver Sprin...
07/15/2026

We're Stronger Together đź’Ş

This past Saturday, we hosted a patient gathering for RRP patients and families in Silver Spring, MD! Most people diagnosed with RRP never meet another person who truly understands what it means to be on this journey. That’s why we're so passionate about creating spaces across the US for patients and families to finally meet someone else who gets it. No one should have to face this alone.

Special thanks to Jasity Rush for all the work she put into making this happen. And, thank you to Precigen for the financial support that makes it possible.

The RRPF Toolkit is filled with practical information designed to help individuals, families, caregivers, and community ...
07/13/2026

The RRPF Toolkit is filled with practical information designed to help individuals, families, caregivers, and community members navigate everyday challenges with greater confidence.

Whether you’re looking for educational materials, helpful guides, or tools to support greater independence, our toolkit is a great place to start.

Explore the available resources and bookmark the page whenever you need it. Visit the Toolkit at rrpf.org to learn more.

Our next Patient Gathering is coming up this Saturday at 1:00 p.m. in Silver Spring, Maryland, and there’s still room fo...
07/06/2026

Our next Patient Gathering is coming up this Saturday at 1:00 p.m. in Silver Spring, Maryland, and there’s still room for you! Sign up today and join us for an afternoon with people who know what it means to be an RRP patient.

Register now 👉️ https://f.mtr.cool/oylknuphoe

Our 2026-2027 Patient Gatherings are sponsored exclusively by Precigen.

We’re feeling really grateful for everyone in this community who has shown up for this mission over the years, whether y...
06/23/2026

We’re feeling really grateful for everyone in this community who has shown up for this mission over the years, whether you’ve been with us for a long time or you’re just learning about us now.

Giving feels good when you know exactly where it goes. A recurring gift of $5 or $10 a month reaches families and the clinicians who treat them, advances advocacy at the policy level, supports scientists working to better understand this disease, and keeps us at the table with pharmaceutical companies developing new treatments.

We invite you to make a gift today. 👉️ https://buff.ly/32iwV37

We celebrated RRP Awareness Day earlier this month. It's a moment we look forward to every year. But we also know that o...
06/22/2026

We celebrated RRP Awareness Day earlier this month. It's a moment we look forward to every year. But we also know that our community needs and deserves support all year long. There’s always a clinician who needs better resources, a family looking for answers, a researcher we want to connect with, or a policy conversation we need to be part of.

A monthly gift makes that possible. It’s the kind of giving that feels good because you know it’s doing something real — long after the awareness day posts are gone. We invite you to make a gift today. 👉️ https://buff.ly/uL3C9XP

Our next Patient Gathering is set for July 11 at 1:00 p.m. in Silver Spring, Maryland. This lunch is hosted by the RRPF ...
06/17/2026

Our next Patient Gathering is set for July 11 at 1:00 p.m. in 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!

Register now 👉️ https://buff.ly/Ljk2uKR

Our 2026-2027 Patient Gatherings are sponsored exclusively by Precigen.

Monthly giving is something we don’t talk about enough, and how much it matters for a foundation like ours. It’s not abo...
06/16/2026

Monthly giving is something we don’t talk about enough, and how much it matters for a foundation like ours. It’s not about the amount so much as the consistency.

When donors give $5 or $10 every month, it gives us something really valuable: the ability to plan. It means we’re not scrambling between campaigns or waiting to see if we hit a goal before we can move forward on something important. It means the work keeps going.

If you’ve been on the fence about giving for the first time, we invite you to make a gift today. A small recurring contribution is one of the most meaningful things you can do for this community.

Start your monthly support at any level today 👉️ https://buff.ly/uL3C9XP

 : Today, the RRP community came together to do what awareness days are meant to do: share voices, build understanding, ...
06/11/2026

: Today, the RRP community came together to do what awareness days are meant to do: share voices, build understanding, and remind others that every story has the power to make an impact.

We are grateful to every individual, caregiver, family member, advocate, supporter, and healthcare provider who helped make today about what matters most: the voices of the RRP community.

The stories shared today reflect the real-world impact of recurrent respiratory papillomatosis, from the physical and emotional challenges of living with RRP to the strength, resilience, compassion, and advocacy that define this community.

Thank you to everyone who contributed, listened, shared, and helped raise awareness.

Visit the RRP Awareness Day website to read and watch more stories from the RRP community: https://rrpawareness.org

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P. O. Box 6643
Lawrenceville, NJ
08648

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