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 va**nally 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/

๐Ÿ—“ HPV Awareness Day - What is HPV? ๐Ÿ—“Did you know?-HPV is a group of over 200 viruses that are spread by skin-to-skin con...
03/04/2025

๐Ÿ—“ HPV Awareness Day - What is HPV? ๐Ÿ—“

Did you know?

-HPV is a group of over 200 viruses that are spread by skin-to-skin contact.
-80% of people will get HPV at some point in their lives.
-HPV can cause cancer in the mouth, throat, cervix, va**na, v***a, a**s, and p***s.
-Screening saves lives: Regular cervical screening can detect HPV infection and cell changes that could lead to cancer.

Your support can make a difference. Donate to the RRPF to help us continue our advocacy, support individuals affected by RRP, and fund critical research.

๐Ÿ‘‰ Donate here: https://rrpf.networkforgood.com/projects/247160-2025-hpv-awareness

๐Ÿ—“ HPV Types 6 & 11 - What to knowโ€ฆ ๐Ÿ—“-HPV Types 6 and 11 are responsible for most cases of ge***al warts.-These types can...
03/04/2025

๐Ÿ—“ HPV Types 6 & 11 - What to knowโ€ฆ ๐Ÿ—“

-HPV Types 6 and 11 are responsible for most cases of ge***al warts.
-These types can also cause Recurrent Respiratory Papillomatosis (RRP), a rare disease where benign tumors grow in the respiratory tract, leading to breathing difficulties.
-The HPV vaccine is effective in preventing infections caused by HPV types 6 and 11.

Donate to the RRPF to help us continue our advocacy, support individuals affected by RRP, and fund critical research.

๐Ÿ‘‰ Donate here: RRPF Donation Page https://rrpf.networkforgood.com/projects/247160-2025-hpv-awareness

Together, we can raise awareness, promote prevention, and support those affected by HPV and RRP.

๐ŸŽ‰ Celebrate HPV Awareness Day - March 4th! ๐ŸŽ‰Today, we join hands globally to raise awareness about Human Papillomavirus ...
03/04/2025

๐ŸŽ‰ Celebrate HPV Awareness Day - March 4th! ๐ŸŽ‰

Today, we join hands globally to raise awareness about Human Papillomavirus (HPV) and its impact on our health. Together, we can make a difference!

๐ŸŒ Why This Day Matters:
-80% of people will be infected with HPV at some point in their lives.
-HPV is responsible for 6 types of cancer, including cervical, oral, and a**l cancers.
-Vaccination can prevent more than 90% of HPV-related cancers.
-Early prevention and regular screening save lives.

๐Ÿ’‰ Take Action:
-Get vaccinated and protect yourself and your loved ones.
-Spread the word about HPV prevention and awareness.
-Support organizations like the RRPF in their advocacy and education efforts.
Your support and involvement are crucial in the fight against HPV and its related health issues.

๐Ÿ‘‰ Donate here to support our work: https://rrpf.networkforgood.com/projects/247160-2025-hpv-awareness

Love when our research partners highlight our community!
02/28/2025

Love when our research partners highlight our community!

On weโ€™re shining a light on & raising awareness for the thousands of patients suffering from this devastating HPV-related disease. Learn more about RRP here: https://bit.ly/3F86lqe

02/25/2025

A wonderful way to begin a Tuesday.

In honor of Rare Disease Week!
02/25/2025

In honor of Rare Disease Week!

What is a rare disease? It's one that affects fewer than 200,000 people in the US. But together, we can make a difference! Join the movement and help raise awareness.

The RRPF is celebrating by hosting a virtual RRP Patient Meet-Up with special guest, Dr. Simon Best. โ€œRRPF-Ask The Doctorโ€

This event is for patients and caregivers. Please use the link below to register. Deadline to register is February 24, 2025 at 9PM CST.

https://www.surveymonkey.com/r/NCZTN57

What is a rare disease? It's one that affects fewer than 200,000 people in the US. But together, we can make a differenc...
02/19/2025

What is a rare disease? It's one that affects fewer than 200,000 people in the US. But together, we can make a difference! Join the movement and help raise awareness.

The RRPF is celebrating by hosting a virtual RRP Patient Meet-Up with special guest, Dr. Simon Best. โ€œRRPF-Ask The Doctorโ€

This event is for patients and caregivers. Please use the link below to register. Deadline to register is February 24, 2025 at 9PM CST.

https://www.surveymonkey.com/r/NCZTN57

The latest from Inovio.
02/10/2025

The latest from Inovio.

INOVIO (NASDAQ:INO), a biotechnology company focused on developing and commercializing DNA medicines to help treat and protect people from HPV-related diseases, cancer, and infectious diseases, today announced that an abstract describing the immunological activity of INO-3107 will be presented as a....

01/10/2025

Do you have pulmonary RRP? Do you want to help find a treatment/cure? This requires no procedures-no needles. The RRPF helps support the pulmonary working group!

I am Hannah, a member of Dr. Sara Pai's research team at the Yale University School of Medicine. We invite you to participate in our Recurrent Respiratory Papillomatosis (RRP) biorepository, which is supported by the RRP Foundation.



We are in the process of creating a biorepository of RRP tissue specimens to enhance our understanding of pulmonary diseases. We would like to know if you would be interested in contributing your stored tissue samples and any serial chest CT scans that you have obtained as part of your clinical care.



You can find an overview of this study in the attached form and on the clinicaltrials.gov website ( search for "RRP Biorepository").



If you would like to discuss the project in more detail, please feel free to call me, or you can email me with any questions or concerns. Participation is entirely voluntary, but we hope you will consider contributing to this important project, which aims to advance our understanding of pulmonary RRP disease and help develop new therapies.



Please let us know if you would like more information. Thank you for considering our invitation!

ClinicalTrials.gov

12/30/2024

This is a historic moment for the RRP Community!

For the very first time, a BLA has been submitted to the FDA for a therapeutic treatment option for RRP!!!!

12/22/2024
Change happens when patients, clinicians, researchers and industry sit down as equals and solve problems. More to come, ...
12/12/2024

Change happens when patients, clinicians, researchers and industry sit down as equals and solve problems. More to come, but enjoy a snippet of the magic of the 2024 RRPF International RRP Roundtable.

Congratulations to our very own, Brandi Allen (PAC Manager) on this well deserved award. You will be hearing much more a...
12/11/2024

Congratulations to our very own, Brandi Allen (PAC Manager) on this well deserved award. You will be hearing much more about the RRPF Patient Advisory group in the new year!

Brandi received the 2024 External United Way of Central Indiana, Diversity Equity, Inclusion, and Belonging Champion award.
There is an internal and external winner, Brandi was nominated and received the external based on the award guidelines below.

A candidate for external diversity champion will... โ€ขDemonstrate a strong commitment to advancing their own awareness, knowledge and skills related to diversity, equity, and inclusion.
โ€ข Serves as an advocate for equitable and inclusive policies and practices within their community.
โ€ข Bringing awareness and guide efforts to disrupt culture barriers in a space outside UWCI.
โ€ข Uses a comprehensive lens of diversity, equity, and inclusion to inform their personal efforts.
โ€ข Actively participates in DEI focused activities, events, and conversations through:
Volunteerism
Advocacy
Civic Action
Social Media Influence
Other community building

Brandi Allen RECURRENT RESPIRATORY PAPILLOMATOSIS FOUNDATION

Day One is complete. A special shout-out to one of our sponsors, Inovio.
12/07/2024

Day One is complete. A special shout-out to one of our sponsors, Inovio.

The RRPF will be welcoming invited attendees from around the world on 12/6/2024! Thank you to our sponsors!
12/04/2024

The RRPF will be welcoming invited attendees from around the world on 12/6/2024! Thank you to our sponsors!

Did you know that your support of the RRPF is often used to help support projects that result in better patient care? Th...
11/27/2024

Did you know that your support of the RRPF is often used to help support projects that result in better patient care?

The 2024 Bevacizumab Consensus Statement is one such project.

Your support is changing lives.

1/ ๐Ÿ—ฃ๏ธ New Consensus Statement!
Experts have provided detailed guidance on the use of systemic bevacizumab (Avastin) in patients with recurrent respiratory papillomatosis (RRP), a condition with limited treatment options.

2/ ๐Ÿ“‹ Key Points:
โ€ข Consensus reached on clinical benefits of bevacizumab.
โ€ข Patient characteristics & shared decision-making are critical for treatment.
โ€ข Guidelines for dosing, monitoring, and reintensifying therapy.

3/ ๐Ÿšจ This nonsurgical approach could shift treatment paradigms for RRP patients. The expert consensus covers 9 critical domains for clinicians to guide therapy.
Full study in Laryngoscope (https://doi.org/10.1002/lary.31670).

4/ Big thanks to the authors: Simon Best, Jonathan Bock, Nicole Fowler, Eric Raabe, and more! ๐Ÿ‘

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P. O. Box 6643
Lawrenceville, NJ
08648

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