RRPFORG

The RRPF exists to support patients, caregivers with education and access to RRP resources, as well as fund vital research. We are a Rare As One org.

[RRPFORG @RRPFORG1]

We are here! April 17, 2023, a RRPF bucket list day! #IPVC2023 #recurrentrespiratorypapillomatosis #HPV #whilewebreathewehope

[RRPFORG @RRPFORG1]

The RRPF is thrilled about this award. Elevating the voices of patients around the globe can and will drive us closer to non-surgical treatments!

[National Organization for Rare Disorders (NORD) @RareDiseases]

We are pleased to announce four patient advocacy orgs have been awarded the chance to join our IAMRARE Program and implement a natural history study to be included in the #RDCADAP! They are @cure4ars, @FamilieSCN2A, @NationalCMV
& @RRPFORG1.

Learn more: https://t.co/xLZ3FmUHci

[RRPFORG @RRPFORG1]

Raymond So and Marissa Stiff were the 2022 Founders Scholarship Awardees. You can read more about their stories and work here: https://t.co/gQ0qYfMGKI.

We're raising funds for the 2023 Scholarships until Rare Disease Day on 2/28. Show your support today! https://t.co/yVvdvctLdR

[RRPFORG @RRPFORG1]

Raymond So and Marissa Stiff were the 2022 Founders Scholarship Awardees. You can read more about their stories and work here: https://t.co/gQ0qYfMGKI.

We're raising funds for the 2023 Scholarships until Rare Disease Day on 2/28. Show your support today! https://t.co/yVvdvctLdR

[RRPFORG @RRPFORG1]

Visit https://t.co/ML5IacB6y6 to add a social media profile, filter, banner, and more! Let's wear our stripes proudly!

"Alone we can do so little; together, we can do so much."
-Helen Keller

[RRPFORG @RRPFORG1]

Together, with the facts, we can and will end the reign of HPV related cancers and new cases of JORRP!

[ACS National HPV Vaccination Roundtable @HPVRoundtable]

How can healthcare providers combat vaccine misinformation? Find out in @UnityConsortium’s podcast FACTSinnated. This episode features Todd Wolynn, co-founder of Shots Heard ‘Round the World and CEO of Kids Plus Pediatrics. Take a listen! --> https://t.co/rEBb2GTMZi

[RRPFORG @RRPFORG1]

Any type of illness that alters your ability to communicate, as well as your airway, brings a despair only those impacted truly understand. We see this in so many RRP patients.

[JAMA Oncology @JAMAOnc]

Study shows incidence of suicide among pts undergoing cancer operations was significantly elevated compared to general population, highlighting need for programs to actively implement regular suicide screening among such pts https://t.co/LSKWuI7Ymy

[JAMA Oncology @JAMAOnc]

Study shows incidence of suicide among pts undergoing cancer operations was significantly elevated compared to general population, highlighting need for programs to actively implement regular suicide screening among such pts https://t.co/LSKWuI7Ymy

[RRPFORG @RRPFORG1]

The RRPF will be in-store from 12-2 today! #KendraScott #Bentonville #RogersAR #recurrentrespiratorypapillomatosis

[RRPFORG @RRPFORG1]

@DavidFajgenbaum @MilkenInstitute @TanishaCarino @jonirutter @millerbioethics How to get past barriers to biosimilar repurposing that wasn’t on the original drug.

[RRPFORG @RRPFORG1]

@DavidFajgenbaum we would welcome the opportunity to chat about drug repurposing. Our President, Kim, is attending Milken virtually. The RRPF has identified a drug for repurposing.

[Andra Stratton @livinlavidalopo]

I have had some of the worst experiences of my life going through TSA pat down as someone who’s body type sets off the screening due to my #RareDisease. Thanks for the support @MarkHamill

[RRPFORG @RRPFORG1]

Are you a clinician that treats RRP patients? Have you wish their was a resource you could share with them about the RRP journey! It’s coming!! A patient toolkit is a 2023 project! Support the RRPF on Giving Tuesday to partner with us on this project! #laryngealpapilloma #HPV

[RRPFORG @RRPFORG1]

A post of our gratitude to you-our partners.

[RRPFORG @RRPFORG1]

Support the RRPF when you purchase your Holiday cards! #laryngealpapillomatosis #recurrentrespiratorypapillomatosis #fundraiser #investintheRRPF #CureRRP

[RRPFORG @RRPFORG1]

You can follow the RRP Foundation on the following social media accounts to keep up with the latest news and general engagement with the foundation.

Facebook: Recurrent Respiratory Papillomatosis Foundation
Twitter: @rrpforg1
Linkedin:@rrpforg
Instagram:@rrpforg

[RRPFORG @RRPFORG1]

Work on your shopping list today and support the RRPF while benefitting from 20% off! https://t.co/K0BF4pCfXw offers holiday cards, stationary, unique invitations, art, home decor and an array of gifts! Use the code FUNDRAISERRPF at checkout for all your holiday needs.

[RRPFORG @RRPFORG1]

The RRPF is reminding you that we can be found on LinkedIn, Instagram and Facebook…as well as our website https://t.co/VGf15gdn5r.

[RRPFORG @RRPFORG1]

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