Eden's Journey with Recurrent Respiratory Papillomatosis (RRP) скачать в хорошем качестве

Eden's Journey with Recurrent Respiratory Papillomatosis (RRP)

Partner with us as we work towards a cure for RRP. Learn more and support our research efforts at www.rrpf.org Copyright 2021 by Recurrent Respiratory Papillomatosis Foundation and Tansey Family. All rights reserved. No part of this video may be reproduced or transmitted in any form or by any means, electronic or mechanical, without the written permission of the copyright holder. Eden's story is an all too familiar story for many people living with RRP. Unfortunately, it is nearly the exact same story of patients diagnosed over 50 years ago. The standard treatment option, repetitive and traumatic surgeries forever damaging the vocal cords, has changed very little in over half a century. In many developing countries, the standard treatment option is a tracheotomy, most often due to lack of resources for the family to travel for care, lack of diagnosis, and/or lack of surgical care centers near the patient. As a foundation, we refuse to allow this story to continue for the next generation. We are grateful for Eden’s family for telling her story, but also to her family for speaking to how it has impacted the family. Her story, her family’s story, is the same story of so many RRP Warriors. We are on the cusp of finding non-surgical treatment options, and hopefully one day a cure, but we need your support to continue moving forward. Your partnership and support are so deeply appreciated and provide hope for our current RRP warriors and for the generation to come. Current RRPF RRP projects include creating a Research Network, building a new, modern, engaging website to include a secure Kid Zone and Researcher Portal, identifying clinical and research Centers of Excellence, working to create a biorepository for tissue and blood samples to help drive research, research to better measure incidence rate for pulmonary RRP, work to determine true risk of HPV 11 compared to HPV6, as well as continuing to grow the RRP Patient Registry, a true diagnosis to death patient led registry with a 100 year IRB approval. Become a partner with the RRPF as we work together to find non-surgical treatment options, and ultimately, the cure. Reach out if you would like to join us in our mission, or if you are a patient/caregiver. [email protected] @rrpforg on Facebook THIS VIDEO CANNOT BE POSTED ON OTHER WEBSITES OR SUPPORT GROUPS WITHOUT THE WRITTEN PERMISSION OF THE RRPF AND THE TANSEY FAMILY. #laryngealpapilloma #recurrentrespiratorypapilloma #HPVRoundtable #HPV #HPV6 #HPV11 #pediatricHPV #lungcancer #pediatriccancer #JRRP #JORRP #AORRP #HPVRoundtable #IPVC #americancancersociety #americanlungcancersociety #voicedisorder #laryngology