CML Patient Advocates: Tous unis, Tous uniques (All United, All Unique)

CML Horizons 2013 attendees gathered in Old Town Prague for the group photo.

CML Horizons 2013 attendees gathered in Old Town Prague for the group photo.

CML can be a very lonely disease. It’s not uncommon for a patient to never meet another person with our rare leukemia. Slowly, and very surely, this is changing. More and more CMLers are getting together in online patient forums and through the National CML Society’s CML Connections groups and other events. It’s an overpowering feeling and affirmation of life when you meet another CMLer. I’ve seen people who were 10 years out from diagnosis in tears from meeting another person with CML for the very first time. Tears of joy.

So you can imagine the hugs that took place recently at the CML Horizons 2013 conference in Prague. This was NOT a medical conference for oncologists – this meeting’s for leaders of CML patient advocacy groups around the world. All coming together to learn from each other and share ideas so we can make life better for our community. Participants are members of the CML Advocates Network, a nonprofit group made up of 76 organizations from 60 countries. Think about that for a minute – 60 countries! Every continent! For a disease that used to be pretty much a death sentence for anyone who got it. We are growing in numbers, as are our needs, issues, and challenges.

So did we work hard and learn a lot? Yes we did. We heard from world-renowned CML experts like Tim Hughes from Australia, Gianantonio Rosti from Italy, Dina Ben Yehuda from Israel, Katerina Machova from the Czech Republic and Fabio Efficace from Italy. Advocacy group leaders shared best practices and case studies and we covered topics including substandard drugs and generics; e-advocacy and social media; advocating to policy makers and how to run patient meetings.

NCMLS founder Greg Stephens has been before, but this was my first meeting. CML friends that up to that point had been faces in squares on Facebook suddenly were right there – living, breathing, hugging, laughing, sharing and, at times, getting really serious about the issues we all face. It was an absolute delight to connect with them and make new CML friends too.

The French patient support group, Leucemie Myeloide Chronique France, uses the saying, “Tous unis, Tous uniques,” which means “All united, All unique.” That phrase really describes the global CML community. Each one of us has our own individual CML journey that makes us unique, yet we are united together by this disease and, ultimately, in the quest for a cure. Whether you spell it leukemia or leucémie or leukemija or 白血病 or leukemi or סרטן הדם or леукемија, or any other way, it really doesn’t matter. By working together, with each other and with the medical community, we can accomplish remarkable things, and are doing so!

  • Thank you for the message and thank you for the time you put into your CML advocacy!

  • LMC France

    Thank you so much Pat for this wonderfull article ; it was a great pleasure to meet you at CML Horizons 2013 🙂

    Hope to see you soon