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As always, it has been a pleasure to meet up with CML advocates from all over the world. Old friends with the same challenges: how does everyone get the medication they need to survive? why aren’t advocates involved in the design of clinical trials? how can side effects be managed better? when will there be a cure?
Until we can answer these questions in a way that makes patients feel empowered, cared for and listened to, our work is not done.We are hosting our 8th #CML Community Advisory Board with 19 #patientadvocates from 16 countries and 9 representatives of the pharmaceutical industry. Keep on working on promoting best-in-class CML research, the harmonisation of good clinical practice, standard of care and access to best available CML therapies and diagnostic tools.
#CMLCAB #ChronicMyeloidLeukemia
Jan Geißler Giora Sharf Jana Pelouchová Kathy Redmond Celia Marín Bahija Gouimi Felice Bombaci Silvia Castillo de Armas Cornelia Borowczak Lisa Machado Pat Garcia-Gonzalez Gail Sperling Mercedes Arteaga Rita O. Christensen Lidija Pecova Peter Parker Param Puthen Zack Pemberton-Whiteley Šarūnas Narbutas
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Did you know that CML is considered a rare cancer? Fortunately we have treatments that are effective for many. But for many other rare and ultra-rare cancers, this is not the case. That’s why the Canadian CML Network works closely with the Canadian Organization for Rare Disorders – to aim for a day when people living with other rare cancers can access treatments that work too.
This past weekend was a fantastic three days of incredible people, progressive dialogue about rare diseases and how to make living easier for those living rare.
Highlight for me was speaking during a Rare Cancer workshop on the value of collaboration, not just for patient groups, but also patients and caregivers. Lots of questions, lots of solutions and ideas … Lots of discussion around a Canadian Rare Cancer Coalition. Most important, lots of people with skin in the game who came out on a rainy day to talk about what they need. Yay! I am excited to see what comes next! Thank you Canadian Organization for Rare Disorders and Rare Diseases International, and all who travelled so far to be here. Amazing.
CML Advocates NetworkFinal Day #Raredialogue2019 @rarediseasesint #ThankYou to this #Amazing Group for Joining from around the world! #RareDisease
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