New ePAG patient advocate for Pediatric and Primary Lymphedema

We would like to officially announce that Elena Matta has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Pediatric and Primary Lymphedema (PPL).

“I put great efforts into bringing my experience and my network to support patients and their families. I strongly believe that acceptance, professional care and personal determination are the keys in being able to keep fighting with lyphedema, and not against it. I want to communicate that it is possible to have a “normal” life, to do sports and to follow our passions. It is possible to be happy, despite lymphedema. The only requirement is to have courage, determination and to look at tomorrow with inexhaustible HOPE.”

Elena is from Italy and is a representative of Lymphido ONLUS, an Italian non-profit association for people suffering from primary lymphedema. Lymphido was born in Piedmont, Italy in 2016 from the idea and the engagement of families with children affected by lymphedema who had the common desire to collaborate and cooperate together, with the precious support of sector specialists and regional public bodies. In the association, she acts as an expert patient, strongly participating in the planning and deployment of the Children Summer Camp, organized by Lymphido ONLUS and by the Multi-disciplinary Research Center of Rare Diseases (CMID, Centro Multidisciplinare di Ricerche di Immunopatologia e Documentazione su Malattie Rare), located in Turin, Italy.

This month, Elena will be attending CMID’s 23rd Conference on Immune Pathologies and Rare Diseases, that will take place from 22-25th of January, 2020 in Torino Italy. She will be joined by ePAG Co-Chair for the PPL WG, Pernille Henriksen. Together, they will represent primary lymphedema patients at this event and Pernille will be speaking about night time compression.

We welcome Elena to VASCERN and look forward to working with her!

To see the full list of VASCERN ePAG members for the PPL click here.

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