Patient and Caregiver Toolkit
Navigating life with RRPF can be overwhelming, but you don’t have to do it alone. This toolkit was created to support patients and caregivers at every stage of the journey, with helpful information, tips, and trusted resources. Explore the toolkit below or download the full PDF version.
Recurrent Respiratory Papillomatosis (RRP) is a rare, chronic disease caused by the human papillomavirus (HPV), specifically types 6 and 11.
RRP is characterized by the growth of benign (non-cancerous) tumors called papillomas in the respiratory tract…
Recurrent Respiratory Papillomatosis is a challenging condition to manage due to the recurrent nature of the papillomas.
While there are currently no FDA approved medications to treat RRP, several are on the horizon that give us a great deal of hope…
Quality care for RRP is crucial and often more beneficial than relying on emergency department visits.
Here are some key reasons…
Creating a care team involves assembling a group of healthcare professionals with diverse expertise to provide comprehensive and coordinated care.
Here’s a step-by-step guide to help you build an effective care team…
Working with a multidisciplinary team requires patients to track an enormous amount of information across multiple visits and treatments.
It can be difficult to remember every detail, and even more challenging when physicians use different records management software. This can be greatly improved by taking a few steps…
Staying Organized: Online Tools for Managing Your Medical Journey
Keeping track of procedures, symptoms, test results, and appointments can feel overwhelming. This guide highlights online tools and apps that…
Living with RRP: Support and Resources for Students, Parents, and Adults
Navigating life with RRP can present unique challenges, especially in school and the workplace. This guide brings together a collection of…
Navigating health insurance can be particularly challenging for patients with rare diseases.
Many of our patients may have multiple diagnoses and pre-existing conditions which further complicated insurance claims. Here are some key points and…
Understanding the Basics: A Simple Glossary of Insurance Terms
Health insurance can be confusing. This glossary breaks down common insurance terms into plain language so you can better understand…
Appealing an Insurance Decision: Carefully read the denial letter from your insurance company
It should explain why your claim was denied and provide information on how to appeal. If you wish to appeal, here are some steps to take…
Getting the Help You Need with Insurance Support Resources
There are several non-profit organizations that provide resources and assistance for patients dealing with insurance claims. Here are links to…
When you have been diagnosed with RRP, it impacts more than just your physical health
Between the unpredictability about future surgeries, voice changes or loss, as well as missing school, work and social events due to treatment, it is no wonder that RRP can…
