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Light it up for Rare – 28 February 2023

Project Info

Project Description

Today is Rare Diseases Day! We are Part of the Chain! Today we pledge our commitment to remain a strong voice .. if not stronger .. for our patients and their families. It is easy to be theoretical or prosy but it requires commitment, tenacity, funds, practicality and honesty to ensure all patients including rare disease patients have timely diagnosis, equal access to healthcare at home or abroad, access to medicinal, clinical trials and research participation and to all opportunities that enables one to live a full life as much as possible. It is time for a holistic approach at United Nations level to fulfill the resolution passed in 2021 and at a European level by establishing a European Action Plan and for a local National Action Plan.

Thank you, Clint Camilleri, Minister of Gozo, for your support, help, and for being there for our Gozitan patient members!

Honored to have Mr Yann Le Cam, CEO Eurordis with us on Rare Diseases Day! Together we have spread awarenes, visited schools, met patients, thanked volunteers and managed to do the same on our sister island of Gozo too lest no one feels abandoned or isolated. Thank you.