MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe
Reviewed 05/05/2021 BR
We at MPNE believe that patient knowledge is the key to improving the situation in Melanoma.
Knowledge can save your life.
In a life-threatening disease with rapidly evolving therapies like Melanoma, knowledge about the most promising treatments and how to access them can mean the difference between life and death.
Guidelines are an important part of high-quality care for any condition. Guidelines are based on a consensus of an export group and are best when a lot of evidence (results from clinical studies and research) are available.
Melanoma guidelines currently still lag behind what is considered the latest scientific development or simply state 'clinical trials are considered the standard of care', providing little concrete advice for patients.
Knowing what world-reknown Melanoma experts consider the most promising therapies and learning how to access them via clinical trials or early access programs has therefore become vital information for Melanoma patients.
MPNE provides accurate and timely information from the scientific edge of the Melanoma field via the MPNE@ blogs and our forums, as well as the educational tools for Melanoma patients to independently follow the scientific discussion.
We help Melanoma patients to identify and access reliable sources of information (medical journals, websites of medical societies, medical educational material) and require that all health-related claims on our forums and at our conferences are supported by data and referenced because we believe that all Melanoma patients deserve accurate and up-to-date information.
We strongly recommend that Melanoma advocates keep up with the latest developments in Melanoma by attending scientific meetings and following scientific news.
While Melanoma patients often need to acquire knowledge to access the most promising treatments and learn to cope with their diagnosis, they have intimate knowledge about their disease situation.
The ultimate reason of healthcare is to benefit patients with patients being the only primary data source. We therefore encourage a science-based dialogue with all stakeholders to ensure that patients' preferences are captured in an appropriate, relevant and unbiased way and taken into account in healthcare decision making.
Our goal are empowered Melanoma patients who can engage in meaningful discussions about the most promising treatment options based on scientific evidence with their treating oncologists and a system that captures and acts upon Melanoma patient needs in an appropriate way.
Please note that while we strongly encourage patients to educate themselves and to actively engage in scientific discussions, we do not provide medical advice.
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