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 Melanoma Coalition. Since its founding, the group has grown to include 44 organizations from 26 different countries and is enthusiastically supported by not only its partners around the world, but also the global patient, healthcare and pharmaceutical communities.
Member Organizations
ACIAPO foundation
Donde Quiero Estar
Yerevan State
Medical University
Melanoma Patients Australia
Melanoma & Skin Cancer Advocacy Network
Melanoma Institute Australia
Spot the Dot
Euromelanoma
Oncoguia
Melanoma Brasil
Save Your Skin Foundation
Melanoma Canada
Hautkrebs-Netzwerk Deutschland
Selbsthilfegruppe Hautkrebs Freiburg
Selbsthilfe Hautkrebs Berlin
Melanoma Trust
The Israeli Skin Cancer Association
Associazione Contro il Melanoma OdV
Carolina Zani
Foundation
EORTC melanoma group
European Institute of Oncology
Insieme con il sole dentro - Melamici contro il melanoma
Melanoma Italia
Onlus
[Over The Rainbow] Patients Association Japan
Rabab Cancer Foundation
Fundación Piel con Vida
Asociación Mexicana de Lucha Contra el Cáncer
Melanoma New Zealand
HUKAs – De Huidkankerstichting
Dutch Melanoma
Foundation
Melanoma Patient Network Europe
Norwegian Melanoma Patient Group
ESPERANTRA
Portuguese Melanoma Intergroup
Carol Davila University of Medicine and Pharmacy Bucharest
Melanoma España
Turkish Oncology Foundation
Melanoma UK
AIM at Melanoma
Melanoma Action Coalition
Melanoma Research Alliance
Melanoma Research Foundation
Mollie's Fund
Melanoma Uruguay/LATINOAMERICA
Global Working Groups
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
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:
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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)
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Educate the public on how to do self-screenings and training primary care physicians on how to evaluate suspicious lesions.
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Promote reputable cancer registries for improved patient outcomes.
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Increase public awareness with a focus on photoprotection.
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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 26 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:
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Expediting safely/adequately reviewed governmental drug approvals, access to clinical trials, working with insurance companies, and other similar topics, including prevention messaging.
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Overseeing the collection and evaluation of resources, ultimately making them available to the worldwide melanoma community through the Global Coalition website.
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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.
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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.
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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,
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Work with other melanoma organizations for partnering opportunities to work collaboratively and avoid duplication of efforts.
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Recommend potential new members to the steering committee for approval.