New study 2021

MPNE - The burden of melanoma


A melanoma diagnosis means a considerable burden for patients and their family members.


We would like to better understand the burden melanoma causes, how it shapes people’s thinking and what helps them cope with it.


This study captures to understand a melanoma patient’s or carer’s mental adjustment to cancer, their risk and benefit preferences in treatments and their experiences about impact and coping with the disease. 

This is a study conducted by the Melanoma Patient Network Europe, a Share4Rare partner.

Research is at the heart of Share4Rare. Join the community and participate in this research project!

Step 1

Join Share4Rare!

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The talk inside Share4Rare
Gilly Spurrier

"We see in our community the distress melanoma causes. We need to be able to better support patients and those who care for them"

Gilly Spurrier, founder of Mélanome France

Violeta Astratinei

"When my sister was diagnosed with melanoma I looked for treatment options for her. Need really changes how one thinks about what is important"

Violeta Astratinei, founder of Melanom Romania

Bettina Ryll

"Melanoma is a medical and a mental challenge. Better understanding its mental burden will help us to better advocate for what matters to patients"

Bettina Ryll, founder and chair of the MPNE