EB Research Partnership Australia | Non-profit organisation

EB Research Partnership Australia

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23.01.2022 We're thrilled to have @camsincs onboard to raise awareness and funds for EBRPAus Donate today and help us #HealEB ebresearch.org.au/ ... @camsincs #Tillywilkes #HealEB #sincs4eb #legend #motorsport #EBRPAus See more

22.01.2022 Look who's joined our team!! It's Australian freestyle motocross rider (FMX) and Nitro Circus legend Cam (Sincs) Sinclair!! After a terrible accident while attempting a double backflip in 2009, Cam was in a coma for eight days and told he would never ride again. He learnt to walk, talk and function again and was back on a bike in no time.... Cam has fought and overcome his own health battles and says that what he has been through is nothing compared to challenges that children living with Epidermolysis Bullosa face every single day. As our newest ambassador, Cam is joining the fight to find a cure for this debilitating disease. Welcome to the team Cam!! @camsincs #HealEB #EBRPAus #Thanksforthesupport #Legend #sincs4eb

21.01.2022 PELOTON!! Spotted early this morning looking fabulous in their custom designed Lycra! #HealEB #EBRPA #EBRP #ebrf #thanksforthesupport #keilorcyclinggroup #custommade XLR8 Sports Apparel #lookinggoodboys #GoKeilor

17.01.2022 Today is Rare Disease Day!! There are over 300 million people worldwide living with a rare disease and Epidermolysis Bullosa is one of them. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity. ... Rare is many. Rare is strong. Rare is proud. #RareDiseaseDay #EBisrare #HealEB #EBRPA #EBRP #EBRF #Donatetoday #rareisbeautiful #HelpUsHealEB See more

15.01.2022 EB Research Partnership (Australia) is delighted to present our largest and most stunning fundraising event - The Cotton Ball. Held every other year, this sell-out event is not to be missed. Join us on Saturday, May 1st at the Melbourne Town Hall and help us to continue raising funds for life-saving treatments and therapies for EB. ... Tickets on sale now! Limited tickets available, so be sure to secure yours quickly. Link in bio #thecottonball2021 @ebresearchaus #TillyWilkes #EBRPA #familyandfriends #thanksforthesupport #HealEB See more

14.01.2022 Check out this little legends story! Ollie is an 11 year old who lives with EB....well sort of! His little sister, his Mum, Aunty, Grandad, great Grandad, great Aunts, great-great Uncle, youngest Cousin & second Cousin all suffer with EB Simplex (EBS). He tries to help where he can, especially when he sees them in pain. Ollie convinced his mum to allow him grow a mullet then shave it to raise awareness and funds for EB Research Partnership (Aust), to help find a cure for ...the condition that affects so many of his family members. The big shave will happen in Feb 2021 and his mum can’t wait!! Read Oliver Jones' inspiring story and please support him if you can at https://www.ebresearch.org.au/communit/Ollies-eb-fund-razor You are a superstar Ollie! #HealEB #ebrpa #EBCommunity #Ollierocks #mullet #thanksmumforthemullet

13.01.2022 Wishing EBRP Co-Founder #EddieVedder the happiest of birthdays. Thanks for all the amazing work you & Jill do for EBRP. Sending you hugs across the globe, from the team at EBRP Australia & our awesome supporters. We hope to see you here soon! .... . #healeb #matteroftime #EBRP #EBRPA #youraussiefamily #tourdownunder #adayahead #ev4ebrp See more

07.01.2022 We're Back!! Come Say Hi, Byron Bay Australia!! Join us, Karl Stefanovic and the Screamin' Eagles at our annual fundraising event at the Beach Hotel, Byron Bay.... We're so excited to be back!! We need your support more than ever so we can continue to fund life-saving EB Research. So #ComeSayHi at the Beachy! Scan the QR Code to secure your tickets now!! #ComeSayHi @comesayhitoeli Beach Hotel, Byron Bay @ebresearchaus @stoneandwood @chrishemsworth #EBResearchPartnershipAustralia #elimeyer #TillyWilkes #EBRPA #LoveByronBay #cheerupslowdownchillout #seeyathere