Rare Disease Day – 28 February 2021

Rare Disease Day – 28 February 2021 Held on the last day of February each year Rare Disease Day is an international campaign aimed at raising awareness of rare diseases amongst the general public and decision makers about the impact of rare disease on patients’...

Update to Member Services due to COVID-19

Update to Member Services due to COVID-19 Due to the impact of COVID-19 we have already started to change our Business Model so that we are able to provide our education, awareness and advocacy campaigns online, continuing the development of innovative programs for...
Sharon’s Story

Sharon’s Story

Emergency Department, drowsy and increasingly delirious. Doctors began blood tests and found that she had extremely low platelets. Her absolute count was 16,000 so she was given 4 units of platelets overnight in the High Dependency Unit. CT scans showed Sharon had 3...

Event 4

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Event 3

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