• admin | March 25, 2021

    Finding Help Across the Horizon: What Global Collaboration Can Accomplish

    By Bill Crowley, Director of Development

    When the 2011 earthquake and tsunami hit Japan, causing a nuclear meltdown and more than 15,000 deaths, people all around the world donated their money and clothes in support. Every country in the world pitched in for Japan, and this help could not be underestimated.

    I believe this is a really good example of global cooperation.

    When crises occur, communities jump into action. People will accept any help. In the case of a cancer diagnosis, it’s no different.

    In 2013 the MPN Advocates Network was founded by representatives from three MPN groups in the Netherlands, Spain and the UK. Even though only three countries were represented, they had a cosmic objective: to create a global network of MPN patient groups. The goal of the network is to increase collaboration between MPN patient groups and provide a platform for international joint activity outlining the most promising treatment options for patients to discuss with their medical teams. An objective source of reliable information can be a tremendous benefit for MPN patients.

    The network flourished in 2016 when the MPN Research Foundation joined the Advocates Network, along with organizations from Israel, Canada, Germany, Italy, Belgium and Switzerland.

    In November of that year, the MPN Advocates Network convened the first global conference for MPN Advocates. “MPN Horizons 2016” was held in Belgrade, Serbia. Patient advocates came from Australia, Azerbaijan, Belgium, Brazil, Canada, Chile, Denmark, Finland, Germany, Hungary, Israel, Italy, Japan, the Netherlands, Norway, Poland, Serbia, Spain, Slovakia, Sweden, Switzerland, the UK and the USA.

    The conference offered a unique opportunity for MPN patient representatives and advocates to discuss the issues facing MPN patients globally and share best practices.  Discussions topics covered everything from MPN research and current and emerging therapies, to symptom management, advocacy and support.

    The second MPN Horizons conference was held in Frankfurt, Germany October 27-29.  

    This year, the goal of the conference is to build capacity in MPN patient advocates organizations, to grow their skills and knowledge of how to work locally with their groups, improve their ability to meet the needs of their patient communities and strengthen their advocacy activities.

    By encouraging cooperation at a global level between advocates, researchers, clinicians and healthcare organizations, MPN patients everywhere will have a stronger voice to change their prognosis.