New EURORDIS members

As of the 24th November 2016 we were approved to join the associate membership of EURORDIS. We are delighted with this news as EURORDIS represents rare diseases in 64 countries.  With over 700 direct member organisations, EURORDIS is recognised and listened to as an European organisation specialising in the needs of patients with rare diseases.  This is a step forward in helping us with raising the awareness of R(20) worldwide.

If you would like to learn more about this organisation click on this link, http://www.eurordis.org/. This will direct you to their website.

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Latest News and Research

Like most people I wanted to volunteer because of a desire to give back to the community and do something for the greater good.
Research has shown that patients and carers who live with a rare disease experience a negative impact on wellbeing and mental health.