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10.03.2015

Strong voices for EB

DEBRA delegates are strongly represented in US and European rare disease organisations.

We are delighted to report that Brett Kopelan, Executive Director of DEBRA of America, was recently elected as Chairman of the Board of Directors of the National Organization of Rare Disorders (NORD) in the US. Consequently, DEBRA, and EB in general, has a strong voice in policy development and advocacy at the highest levels of US government.

Also, as many of you will be aware, John Dart was appointed Secretary General of EURORDIS (the European rare disease organisation) in 2013 and continues to play an outstanding role in EURORDIS' mission to be the voice of those living with rare diseases in Europe. He is joined on that Board by Vlasta Zmazek of DEBRA Croatia, who has also given many years of valuable support to the efforts of EURORDIS.

More recently, John also represents DEBRA International on the pre-formation group of Rare Disease International, which aims to bring together umbrella rare disease patient organisations from around the world towards common goals. Brett, John and Vlasta are not alone in their efforts and many other DEBRA organisations are represented on rare disease alliance groups in their countries.

A big thanks to all those who volunteer their valuable time to organisations that give a voice to those living with rare diseases. Together we are keeping EB at the forefront of policy development.

Avril Kennan, DEBRA Ireland and DEBRA International

Composite of 3 pictures; left: Portrait of a lady with short bright hair; middle: portrait of a man in his sixties; right: man in suit at a speaker's desk

Vlasta Zmaczek (DEBRA Croatia), John Dart (DEBRA International) and Brett Kopelan (DEBRA of America)