@RRPF.ORG

Support information for the recurrent respiratory papilloma community and foundation #RRPFORG #RRP #papilloma #HPV #laryngeapapilloma

[@RRPF.ORG @RRPFORG]

RRP can spread to the pulmonary space and create life threatening symptoms, and is at a high risk of malignancy, almost always resulting in death. Given its HPV status and cancer risk, is it time to classify all pulmonary RRP as pre-cancer? What's the best way to accomplish?

[@RRPF.ORG @RRPFORG]

For #GivingTuesday, you can find the RRPF shareable event and video feature on Facebook @RRPFORG

[@RRPF.ORG @RRPFORG]

The RRPF is excited to announce that Dr. Simon Best will be presenting information on our RRP Patient Registry at the 2019 Eurogin event. We are excited to gain a larger HPV audience. HIPAA compliant, IRB reviewed. #HPV #RRP #patientregistry

[@RRPF.ORG @RRPFORG]

The RRPF is in the final stages of our new IRB reviewed, HIPAA compliant patient registry. We look forward to patients across the world inputting their data and medical history into the registry. One step closer to a non-surgical treatment method, one step closer to the cure.

[@RRPF.ORG @RRPFORG]

The RRPF is excited to share with our community and followers the most recent position statement from the British Laryngological Association on the use of Gardasil in the RRP population. https://t.co/ffsPAIWWNX

[@RRPF.ORG @RRPFORG]

@Voicedoctor_uk @Laryngology Thank you for this recommendation. We will share this within our social media resources so that our British community members have the latest statement.

[@RRPF.ORG @RRPFORG]

@lymanbiopharma When looking at the impact of the Gardasil vaccine on new cases of RRP, we look to Australia's work-https://t.co/hi1oTMUJXC

[@RRPF.ORG @RRPFORG]

@lymanbiopharma Providing links to some published works that do not have a paywall. https://t.co/DIMgKELT9o
https://t.co/uHQbplA3cn
https://t.co/XBmw8JD9fu

These reports reflect what we have seen reported within our patient support groups.

[@RRPF.ORG @RRPFORG]

@lymanbiopharma There is some evidence, in some RRP patients, that the Gardasil vaccination can help lengthen the time between surgical interventions.

[@RRPF.ORG @RRPFORG]

The #HPVVaccine works. #Gardasil is safe and effective. The RRPF is actively engaged in the goal of a cure/non-surgical treatments for our disease, but we are also on the front-line of advocating for the Gardasil vaccine. The best RRP is the case that never happens.

[Global HPV Control @HPV_research]

Our very own @Robine_RD presenting an inspiring talk on the impact of the #HPVvaccine in BC at @CDCofBC Research Week! A huge decline was observed in BC after introduction of the #HPV vaccination program in BC. #VaccinesWork #researchweek2019

[@RRPF.ORG @RRPFORG]

@AACI_Cancer
The RRPF would like to tell you about our rare cancer patients within our RRP community. HPV cancer impacts our community in a very real way. No child or adult should die from RRP/HPV related cancer, but they do. Help us raise awareness of our cancer subset.

[@RRPF.ORG @RRPFORG]

Does your RRP child have a tracheostomy, narrowed trachea, or other medical issues an EMS/ER would need to know? Danny's Dose is part of the solution. https://t.co/b146Bse4k6

[@RRPF.ORG @RRPFORG]

Thank you Arkansas! 100% correct. HPV vaccine is literally a HPV cancer prevention vaccine, and based on Australia's results, also a great way to prevent new pediatric RRP cases. Vaccinated mothers stop the vertical transmission- https://t.co/6ik7fJJaZ8

[@immunizeAR @Immunize_AR]

HPV vaccine is to prevent cancer, not STDs https://t.co/IqzsQosD29

[@RRPF.ORG @RRPFORG]

The RRPF is at the #nordsummit2019 . Our Director of Patient Engagement is on the ground working to advocate for our warriors and learn how to make the RRPF stronger. Together, a cure. @RareDiseases #HPV #HPVCancer #recurrentrespiratorypapillomatosis

[@RRPF.ORG @RRPFORG]

The RRPF is thrilled to announce they are now members of the American Cancer Association HPV Roundtable.

[@RRPF.ORG @RRPFORG]

An important tool in research. One to make sure your team and your patients are aware of.

[@RRPF.ORG @RRPFORG]

37%! To every physician who is assisting in getting the US HPV vaccination rate up-thank you!

[ACS National HPV Vaccination Roundtable @HPVRoundtable]

SHARE: A study from #HPVRoundtable member @MDAndersonNews shows that the #HPVvaccine has helped reduce the prevalence of #HPV in unvaccinated U.S. men by 37%. That's a win for herd immunity! https://t.co/r814l865hg #wereinwednesday #HPVvax

[@RRPF.ORG @RRPFORG]

The RRPF is excited to announce that our Director of Patient Engagement/Advocacy has been asked to the best guest speaker at the 2020 Arkansas HPV Summit. Together, we will reach global herd immunity.

[@RRPF.ORG @RRPFORG]

Together, we can all play a role in global herd immunity to HPV. We are literally working to prevent HPV related cancer, as well as help to lower/end new cases of recurrent respiratory papillomatosis.

[Noel Brewer @noelTbrewer]

65% of US pediatricians and 42% of family physicians always or almost always used presumptive announcements when discussing HPV vaccine. https://t.co/3QeiP0NmWr New paper by Ally Kempe and colleagues.

[@RRPF.ORG @RRPFORG]

The RRPF is featuring patient stories, as well as our board members on Facebook the next two weeks. Like and follow @rrpf.org on Facebook to learn more about our warriors and our amazing volunteers.