Liste des hashtags les plus populaires par sujet #RDD2019

Highliner Yuri Rhodenborgh boven de Koopgoot. #Rotterdam #RDD2019

Happy Rare Disease Day ! My name is Astrid and I have PTEN Hamartoma Syndrome. It is a rare genetic disorder caused by mutations in the PTEN tumor suppressor gene. Individuals who are born with a PTEN mutation can be diagnosed as having Cowden syndrome,Bannayan-Riley-Ruvalcaba syndrome (BRRS), or Autism Spectrum Disorder (ASD). The clinical manifestations of PHTS are diverse, but commonly include increased risk of cancers (e.g. breast, thyroid, endometrial, kidney, colorectal and possibly melanoma), benign “hamartoma” tumours in several tissues, as well as macrocephaly, neurodevelopmental delay and autism. There is no cure or treatment, and current standard of care consists of cancer surveillance in conjunction with behavioural therapy and surgical intervention, as appropriate. https://www.ptenresearch.org/about-us/what-is-phts/ If you want to learn more about rare diseases and the rare disease day checkout https://rarediseaseday.org #ShowYourRare #pten #phts #RareDiseaseDay #RDD2019 #rarediseases #thyroid #arteriovenousmalformation #tagderseltenenerkrankungen #journéedesmaladiesrares #rarediseaseday2019

Dans 6 mois nous aurons le plaisir de diplômer la promo 2019 et de fêter les 120 ans de l'ITECH en présence de La Marraine Judy Goodson ( APPLE ). Work in progress... #apple#rdd2019#remisedesdiplomes#itechlyon#120ans#anniversaire#ecoledechimie#ecoleingenieur#enseignementsuperieur

Este 28 de febrero apoya e impulsa las investigaciones de enfermedades raras para crear esperanza a todos aquellos que lo necesita. Lo vamos a conseguir con tu ayuda sumate. #muestraqueteimporta #rdd2019 #muestraloraro #rarediseaseday

#rdd2019 #rarediseaseday #3in10,000 #16p11point2microdeletionsyndrome #16p #ilovesomeonewhoisrare #sistersdontcountchromosomes

Did you know around 1.2 million people in Australia are living with a rare disease? Around 400,000 of those are children. Together with Senator Catryna Bilyk and @julie_collins_mp we recognise these 1.2 million Aussies and thank those who joined us at Parliament today. #keayforbraddon #rdd2019 #rarevoicesaustralia

RDD2019 世界希少・難治性疾患の日 Rare Disease Day 〜きょうも、あしたも、そのさきも〜 のオープニングアクトを無事に務めさせていただきました！ 写真は、インタビュアーをしてくださったNPO法人ASrid副理事長で、株式会社テンクーでゲノム医療にも携わられている西村邦裕さん。 本日は、21時まで様々なセッションが開催されていますので、世界に数多あるRDDについて1つでも知る日にしていただければと思います。 詳細は下記ページにてご覧の上、お立ち寄りください。 Rare Disease Day in Tokyo | RDD 2019 https://rddjapan.info/2019/officials/rare-disease-day-in-tokyo/ 最後に、このような光栄な機会をいただきましたRDD日本開催事務局の皆様、NPO法人ASrid事務局長の西村由希子さんとスタッフの皆様、寒い中に足を止めてご参加いただいた皆さんに感謝申し上げます。 #丸ビル #rdd #rdd2019 #T1D #type1 #Diabetes #iddm #1型糖尿病 #糖尿病 #インスリン #エアロビック #エアロビック競技 #aerobic #gymnastics #SKINS #スキンズ

These guys are why I do what I do!! Here they are sporting their jeans for rare genes in honor of World Rare Disease Day! Paley, our geography wiz, is holding the “world” and Reid has got Myo the Traveling Turtle (who wears his cape in “conference purple” for the MTM-CNM Family Connection, Inc.) to represent our specific rare community. #RDD2019 #mtmcnmfamily #myotubularmyopathy #centronuclearmyopathy #showyourrare2019

Meet Shelby and read about her CES Journey: ⠀ ⠀ "I had my emergency surgery after being neglected for weeks on July 30, 2015. It has changed my life and everyone around me has been affected, mostly, my children. I have learned to just take things one day at a time!"⠀ ⠀ Thank you for sharing your story with us! ⠀ ⠀ #RDD2019 #CES #CEF #CaudaEquinaSyndrome #CESWarriors #CaudaEquinaFoundation