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March
22

Connecting across borders with the DysNet RareConnect Forum

Posted on Friday 22nd March, 2013

RCDysNet/EDRIC has a growing community forum which is hosted by RareConnect, set up by EURORDIS and NORD, the world's two major rare disease organisations. 

...  Read further about Connecting across borders with the DysNet RareConnect Forum


January
4

A rare disease doesn't stop DJ Dan

Posted on Friday 4th January, 2013

...  Read further about A rare disease doesn't stop DJ Dan


November
13

TAR Syndrome - a very rare disease

Posted on Tuesday 13th November, 2012

Daniel Copeland, from Liverpool in the UK is a student and a DJ.  He is only the 18th person in the country to have been born with TAR Syndrome, which is short for Thrombocytopenia with Absent radius. 

...  Read further about TAR Syndrome - a very rare disease


September
26

To Malmo we go for the EDRIC Limb Difference Membership Meeting

Posted on Wednesday 26th September, 2012

EDRIC logoOn Thursday, more than 40 people from 20 different organisations will begin to gather at a hotel in Malmo, Sweden for the first ever EDRIC members' meeting. 

...  Read further about To Malmo we go for the EDRIC Limb Difference Membership Meeting


July
27

Scandal reignited, prosthetics progress and amputee athletics

Posted on Friday 27th July, 2012

thumbnail2The Thalidomide scandal has been reignited this week following the Lynnette Rowe compensation victory.  Documents never before released indicate that evidence the drug's damaging effects on unborn babies was covered up, while the drug continued for sale.  There are a couple of links below in our weekly round-up.  It'll be interesting to watch what happens next. 

...  Read further about Scandal reignited, prosthetics progress and amputee athletics


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