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While we breathe, we hope

With our voices united, we can and will work to end the burden of this disease on patients and caregivers. 

Join the RRP Registry
Patients/Caregivers

Our Mission

The RRPF will work to transform the lives of patients with RRP by advocating for a paradigm shift toward non-surgical options by catalyzing innovation through education, research, and collaboration in addition to promoting HPV prevention.

  • Improve care for patients with RRP
  • Advocate for a non-surgical paradigm shift
  • Convene clinicians and researchers
  • Catalyze new research
  • Strengthen RRP community

 

With our voices united, we can and will work to end the burden of this disease on patients and caregivers.

 

Join us

What we're doing to help the rRP community

Join the RRP Registry

Join the ongoing research in the CoRDS Study

Kid Zone

(Coming Soon) A place for kids to connect with other kids living with RRP

RRPF News

See the latest articles about RRPF and our community

Facebook Support Group

Join our community and find helpful information

There are nearly 20,000 global cases of RRP.

Let's change that

Recent RRP Research News and Education

RRP Cases Globally
0 +
Avg. Yearly Cost of Treatment
$ 0
Clinical Trials Ongoing
0
New cases of JORRP in the US yearly (estimated)
0
Cures
14

With every breath, we're helping rRP patients get
their second wind

Join our fight today.

I'd love to help

Patient Stories

"The RRPF has made a huge difference in our daughters' life and helped in so many ways. We don't know where we'd be without them".
BobbyParent
“The group allowed me to understand I wasn’t alone with this condition. It’s almost like my quasi family”
LauriePatient
“I found this group maybe 5-6 years ago and my 30 years of life leading up to that day, I felt so alone.”
SaraPatient
“Doctors provided few treatment options and little to no reassurance. It wasn’t until I found this group that I found hope.”
CelestePatient
“This community has provided a level of love, understanding, support, and encouragement that no one else in our lives could give or even begin to give us”
JesscaCaregiver
“This group has given me a place to be understood by a group of people when it feels like 98% of the population just doesn’t get it."
TaylorPatient
“A couple of years ago I found someone on social media who had also been living with this disease and she added me to this group. It changed my life and gave me a sense of hope and community that I had never felt before”
AlyxPatient
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Keep up to date with rRPF

We work tirelessly to provide the RRP Community with timely and helpful information about trials, treatments and anything else that can help our fight.

Join the RRP Registry

Megan’s Story

September 5, 2023

This disease has had a huge impact on my life and the lives of my parents, my extended family, my friends, and anyone that knows me personally. My journey hasn’t been easy, and it still challenges me every single day.

Breaking News!!!

RRPF President, Kim McClellan to speak at the White House Rare Disease Forum

Tonight! February 28th @ 5:30PM EST

Watch Live