Recurrent Respiratory Papillomatosis Foundation

04/10/2026

HPV doesn't check a box. Neither should you.

When most people hear "HPV vaccine," they think it's only for girls. It's not. HPV affects everyone — and so does the damage it causes.

Recurrent respiratory papillomatosis doesn't discriminate. It grows in the airways of any child, stealing voices, stealing breath, and putting kids through surgeries most adults couldn't imagine. And it's caused by the same virus the vaccine prevents.

No one is immune. No child is exempt. And no parent should skip this shot because they think "it's not for my kid."

It is. It's for your child. Your neighbor's child. Every kid in the carpool.

Two doses between ages 9–11. That's the window. That's the protection. That's the move.

Boys. Girls. Everyone. 💉

04/08/2026

Vaccinate your kids and prevent RRP.

Recurrent Respiratory Papillomatosis (RRP) is caused by HPV. Not the kind you hear about in cancer-prevention ads — though that matters, too. This is HPV growing tumors in your child's airway. Their throat. Their voice box. Making it hard to breathe, hard to speak, hard to just be a kid.

There is no cure. Most patients endure surgery after surgery after surgery. Sometimes dozens and hundreds over a lifetime.

The good news: it's preventable.

The HPV vaccine, given between ages 9–11, doesn't just protect against cervical cancer. It protects against this. Many families would give anything to go back in time and get the vaccine. You still have the chance.

Two doses. Ages 9-11. Talk to your pediatrician soon.

04/06/2026

It's Adolescent Immunization Action Week, and this is our message:

The HPV vaccine protects against HPV types 6 and 11, which are responsible for most cases of recurrent respiratory papillomatosis. If your child is between 9 and 12 years old, now is the time to act. The HPV vaccine is more effective during the pr***en years than when given later.

We can put an end to children contracting RRP. The best way to beat this disease is to prevent it in the first place. Schedule your appointment with your pediatrician, and let's make RRP a thing of the past.

04/02/2026

There's still time to register!

We are excited about our upcoming RRP Patient Gathering in Boston on Saturday, April 25.

Hosted by Craig Mabie, the gathering is designed to be relaxed and conversational. Whether you are newly diagnosed or have been managing RRP for years, these evenings offer a chance to share experiences, ask questions, and simply spend time with people who get it.

There is no cost to attend, but advance registration is required. We hope you will join us for an evening that is always meaningful, supportive, and often a lot of fun.

👉️ https://buff.ly/g70tZE0

03/24/2026

RRPF President Kim McClellan was invited to Vienna, Austria, by Merck to speak at EUROGIN 2026, the world's leading international congress on HPV infections and associated cancers.

It remains rare for the patient perspective to be included at major medical conferences, making this an extraordinary opportunity to elevate awareness of Recurrent Respiratory Papillomatosis (RRP) on a global stage.

Kim's presentation, "HPV in the Airway: The Often Overlooked Burden of Recurrent Respiratory Papillomatosis," challenged long-standing misconceptions about the disease.

RRP is too often labeled as "benign" or "low-risk" — but the reality for patients tells a very different story. RRP can require dozens, sometimes hundreds, of surgeries over a lifetime, significantly impacting breathing, voice, and daily life — and it carries a meaningful risk of malignant transformation.

One of the most powerful moments came when Kim shared direct patient voices — what individuals living with RRP wish their clinicians truly understood. The impact was immediate: the keynote speaker who followed referenced these points and stated it was time to stop calling RRP "low risk."

As Kim reflected, "That moment underscored why patient voices matter: they change narratives, and they drive progress."

The conference also highlighted exciting scientific advancements, including a presentation on the investigational immunotherapy Papzimeos, a newly developed treatment algorithm for adult RRP, and critical insights on HPV typing and vertical transmission.

Kim also connected with global advocates, including Giulia Barina from Vaincre PPR in France — a reminder that progress is strongest when driven by a united, international community.

"We are making RRP impossible to ignore — and that is how we move closer to ending it."

🔬 Learn more about RRP and how you can support the mission at rrpf.org

03/20/2026

Are you an adult living with recurrent respiratory papillomatosis? Researchers want to hear from YOU.

Our partners at EVERSANA are conducting a 60-minute virtual interview study to understand how treatment decisions are made for RRP patients. Share your experiences working with healthcare providers, what factors influence your choices, and how new treatments might impact your care.

✅ 60-minute virtual interview (Zoom)
✅ $120 e-gift card for participating
✅ Help improve care for the RRP community

Deadline: End of April 2026
👉 Learn more and sign up: https://buff.ly/xHcnVtP

03/17/2026

RRPF Patient Gatherings bring together individuals and families affected by Recurrent Respiratory Papillomatosis (RRP) for connection, education, and support. These small regional events help patients share experiences, learn from one another, and build a stronger community. In 2026 we hope to host four events across the country, but need your help to make this a reality!

A single gathering costs approximately $2,500 to host and allows us to provide a welcoming meal, meeting space, and most importantly, community support for RRP patients and their families.

Your support ensures that no patient has to face RRP alone.
Help today 👉️ https://buff.ly/zywHcu5

03/12/2026

Living with RRP means navigating a lot more than just surgeries. It's the financial strain, the emotional toll, the worry about your voice, and the uncertainty about what comes next. For most of us, that's not news. But now there's published research that backs it up.

A new study in The Laryngoscope looked at responses from 122 patients and caregivers in the RRPF/CoRDS Patient Registry to paint a fuller picture of what life with RRP actually looks like. It examined the burden from three angles — economic, clinical, and emotional — and the findings reflect what so many in this community have been living with every day.

Among the biggest concerns reported were permanent communication issues, disease spread, financial burden, and the fear of losing your life to RRP. This is our reality.

What makes this study especially meaningful is that it was built on the voices of real patients. People in our community who took the time to share their experiences through the registry made this research possible — and that kind of data is exactly what drives better awareness and better care.

Read more about the study here: https://rrpf.org/rrp-research-news/

03/09/2026

We recently hosted a gathering in Jacksonville, FL, for RRP patients and families. It was a beautiful time of sharing experiences and encouraging one another. Though our disease is rare, we are never alone. We are stronger together!

Our next patient gathering is on April 25 in Boston. We'd love for you to join us. All you have to do is let us know you're coming --> https://docs.google.com/forms/d/15rILbwhZA5X-IfrmTrRAmbnB9efhEWBtd4X08Nbj_Ew/edit?pli=1

03/05/2026

Kim McClellan, President of the RRPF, and Dr. Tiffiny Hron of Mass General were honored to speak to participants at the 2026 Harvard Rare Disease Hackathon. Sharing the story of RRP and the voices of patients with future researchers and clinicians was both meaningful and inspiring. We are grateful for the opportunity to raise awareness and spark new ideas for impact.

03/04/2026

We are so thankful for our partners, such as INOVIO Pharmaceuticals

As a rare disease, doesn’t always make it into conversations about HPV. Last year INOVIO was proud to sponsor an opportunity for the Recurrent Respiratory Papillomatosis Foundation to connect with the HPV Cancers Alliance – listen to their conversation about the RRP patient experience and the importance of bringing RRP into the broader HPV-related cancer community: https://bit.ly/4ceYhTs

03/04/2026

It's an infection, not a moral failure.

For most people, contracting the most common sexually transmitted virus in America doesn't include symptoms or a disruption of their lives. But for some of us, our world is turned upside down.

Recurrent Respiratory Papillomatosis is one of many possible conditions that arise from HPV. It can steal your voice, your ability to breathe, and even your life.

Get vaccinated. Prevent HPV. Stop the stigma.