They may speak in different languages, have different professions and different experiences, but everyone involved in Know AML has the same mission – to improve the lives of people affected by acute myeloid leukemia (AML).
Know AML brings together the whole AML community, from patient representatives to healthcare professionals plus almost 30 advocacy groups and umbrella organizations from around the world to raise awareness of this devastating disease.
As Gert Ossenkoppele, professor in hematology at VU University Medical Center Amsterdam and Know AML ambassador group member, noted: “We are at a point where hope for progress in the treatment of this disease has never been higher.” And this progress needs to be shared with patients everywhere.
Guidance and support for all
Brian Tomlinson, Chief Program Officer at CancerCare and a Know AML patient advocacy ambassador explained, “Know AML is the world’s first global AML awareness initiative that aims to provide patients, carers, families and healthcare professionals with all the information, resources and support they need.”
“Our aim is to bring together the whole AML community so we can work collaboratively to make lives better for people living with this disease.”
The initiative, which marked this year’s AML World Awareness Day by launching a new website of resources, works to identify and fills gaps in support and educational materials. It is hoped that the new website will become the “go-to” place for clinicians, patients and carers.
A global network of advocates
Know AML is steered by an independent, multidisciplinary ambassador group. All interested groups – patients, families, specialist nurses, advocacy groups and physicians – have representation on the panel.
The ambassadors meet regularly to discuss unmet needs that may have been identified by one of the Know AML partner organizations. This could be information on a particular treatment option, support for caregivers or healthcare professional education.
Having worked closely with its ambassadors to create and develop materials, these are shared throughout the Know AML network of advocacy groups, which includes 28 organizations from across the globe. This approach ensures vital resources are spent in the most effective way and contribute to equity of care in all regions.
“The groups take content we develop and provide, and they distribute it to their communities,” said Gary, adding Know AML has a role throughout the year, not just during AML World Awareness Day.
“We act as a hub to provide the advocacy groups with the resources they need to raise awareness. AML World Awareness Day is an opportunity to draw people’s attention to these, but we’re working all year to make sure we provide resources to give much-needed support,” he said.
All these resources are available on the group’s new website.
Gary and Brian participated in our webinar, “Knowledge is power – using education and awareness to drive positive change for patients”, on May 3. To find out more and to watch on demand, please click here.
Gary Nolan, Education Director, Scientific Education Support and Know AML secretariat member
Gary is a marketing professional who has worked in the healthcare industry for the past 13 years. He has conceptualized and developed numerous solutions including global advertising campaigns, patient awareness initiatives and cutting-edge digital platforms.
Brian Tomlinson, Chief Program Officer, CancerCare and Know AML patient advocate ambassador
Brian Tomlinson directs all aspects of CancerCare’s programs and services, including a staff of professional oncology social workers who provide information, resources and psychosocial support to people with cancer and their loves ones. Mr. Tomlinson also oversees CancerCare’s extensive portfolio of educational programs designed to inform and empower the oncology community to make informed healthcare decisions. In addition, he leads the organization’s national patient assistance programs, which provide direct financial assistance for treatment-related needs.