WHO WE ARE
Mission & History
In 2014, the Melanoma Research Foundation (MRF), in response to the global need for bringing the patient voice to the melanoma space, brought together organizations from around the world to create the Global Coalition for Melanoma Patient Advocacy. Since its founding, the group has grown to include 39 organizations from 24 different countries and is enthusiastically supported by not only its partners around the world, but also the global patient, healthcare and pharmaceutical communities.
Facilitated by the MRF, the Coalition meets the vital needs of the worldwide melanoma community through the functioning of three working groups, each specializing in a unique area (Melanoma Awareness and Patient Resources, Patient Advocacy and Access to Treatment and Collaboration and Recruitment). These areas have been identified by the group as addressing relevant global issues for melanoma patients. The work being done by each group is as follows:
Melanoma Awareness and Patient Resources
Melanoma Patients Australia
Skin Cancer Tasmania
Melanoma & Skin Cancer Advocacy Network
Spot the Dot
European Dermatology Forum
Save Your Skin Foundation
Selbsthilfegruppe Hautkrebs Freiburg
Selbsthilfe Hautkrebs Berlin
European Institute of Oncology
EORTC melanoma group
Associazione Contro il Melanoma OdV
[Over The Rainbow] Patients association Japan
Rabab Cancer Foundation
Fundación Piel con Vida
Asociación Mexicana de Lucha Contra el Cáncer
Melanoma Patient Network Europe
Dutch Melanoma Foundation and Melanoma Patient Network Europe Ocular/Rare
Norwegian Melanoma Group
Carol Davila University of Medicine and Pharmacy Bucharest
Turkish Oncology Foundation
AIM at Melanoma
Melanoma Research Alliance
Melanoma International Foundation
Melanoma Research Foundation
Melanoma Latin America
Global Working Groups
Melanoma Awareness and Patient Resources
New research has found that nearly 90% of melanomas are preventable, so raising awareness is of utmost importance to slowing the rapidly rising worldwide rates of diagnoses. Despite the best efforts of many groups to raise awareness, much is still unknown about what messaging effects change in public behavior, which is where the Melanoma Awareness Working Group sees the opportunity to make a positive impact. Currently, the Awareness Working Group is striving to:
Develop new approaches to both primary prevention (sun safety messaging to prevent melanoma from occurring) and secondary prevention (detecting melanoma early after it has occurred)
Educate the public on how to do self-screenings and training primary care physicians on how to evaluate suspicious lesions.
Promote reputable cancer registries for improved patient outcomes.
Increase public awareness with a focus on photoprotection.
Create core messaging regarding prevention for Coalition members to adapt for their countries and distribute to their constituencies.
Additionally, one of the most meaningful initiatives for the group has been the creation of the first World Melanoma Month. Hereafter, World Melanoma Month will be recognized during the month of May each year around the world. All 22 partner countries will conduct their own outreach and public health initiatives that meet their unique cultural needs.
Patient Advocacy and Access to Treatment
In many countries, the only treatment available to melanoma patients is traditional chemotherapy, and in some countries, no options exist at all. Additionally, in some places where newer, more effective treatments are available, they are at times offered at such a cost as to be inaccessible by large portions of the population. This disparity results in drastically different outcomes for patients based on where they are located and if they have the resources to cover the cost of the drugs or to travel to a location where they are available.
The Patient Advocacy and Access to Treatment Working Group is working to develop and share effective methods and programs to advocate for the benefit of the melanoma community. These efforts include advocating with governments, pharmaceutical companies, health systems, academia, and other appropriate bodies, in addition to:
Expediting safely/adequately reviewed governmental drug approvals, access to clinical trials, working with insurance companies, and other similar topics, including prevention messaging.
Overseeing the collection and evaluation of resources, ultimately making them available to the worldwide melanoma community through the Global Coalition website.
The objective is to share existing content created by the members of the coalition and other appropriate channels, including government publication, pharmaceutical company, academia, and public resources, etc.
Assist advocates in each country through training and education to identify, work with and successfully gain approvals with HTAs and government bodies to ensure treatment access.
Share best practices and resources to educate and mobilize advocates on behalf of the melanoma community.
Collaboration and Recruitment
This working group is responsible for researching and finding other global melanoma organizations and evaluate the potential overlap of missions. Also, to explore possible future collaboration efforts.
The working group is composed of coalition members from various countries and represent all continents worldwide, with expertise and or strong interest in these specific areas.
The mission of the collaboration working group is to,
Work with other melanoma organizations for partnering opportunities to work collaboratively and avoid duplication of efforts.
Recommend potential new members to the steering committee for approval.
The Global Coalition for Melanoma Patient Advocacy meets in person annually, with its last meeting occurring during the Society for Melanoma Research annual meeting. However, these working groups communicate year-round to make sure they are on target with their goals and advancing the state of melanoma care and advocacy around the world. The Global Coalition for Melanoma Patient Advocacy is strongly positioned to move forward in the months and years ahead and is determined to make the deadliest skin cancer curable through its worldwide partnership.