pharmaphorum to host rare disease Twitter chat

Hannah Blake


There are over 100 million people living around the world with a rare disease. The 28th February is Rare Disease Day, which is a global initiative coordinated by EURORDIS to raise awareness for these people and their families. This year’s theme is ‘Rare Disorders without Borders’.

“The theme for 2013 reminds us tackling rare diseases with an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.”

EURORDIS’ Rare Disease Day website.

To coincide with this awareness day, pharmaphorum will be hosting a rare disease tweet chat on the 1st February 2013 at 4 PM GMT / 10 AM CST. A number of rare disease organisations and patients have agreed to participate in what we hope will be a lively discussion.

We also hope that you can join us too – just use the hashtag #pharmaphorum on the day to follow the thread. If you’d like more information, including the themes of the Twitter chat, please email

The conversation will then be used to create an article which will be published on pharmaphorum on Rare Disease Day.



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