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In the Media


3,4 DAP / Firdapse – Orphan Drugs and cost to the NHS

Neurologists speak out:

BMJ investigates Orphan Drugs: http://www.bmj.com/content/341/bmj.c6459.full


Other press on 3,4 DAP/ Firdapse:





TV on 3,4 DAP / Firdapse:

Doctors’ anger at drug loophole: http://www.bbc.co.uk/news/health-11798183

Drug companies ‘exploiting law for profit’: http://www.channel4.com/news/drug-companies-exploiting-law-for-profit

Raising Awareness of Myasthenia in Children

Jeans for Genes Day 2010:

Ellie’s parents are running the great north run:

Click on the picture below to read the full story in JournalLive.co.uk
Parents running Great North Run for daughters rare condition

We’re running for our little survivor
Journal Live
In her short life, Ellie, who has Congenital Myasthenia Syndrome (CMS), has already suffered many near-fatal cardiac arrests and her family must always be

Baby RB


Baby RB and Finley’s story


CMS Blogs

Carter Family and Congenital Myasthenia – http://www.cmskyla.blogspot.com/

Luke and Congenital Myasthenic Syndrome – http://www.cmsluke.blogspot.com/

Jake Roszelle and CMS – http://jakescmsstory.blogspot.com/

Life with CMS (A Parent’s Perspective) – http://lifewithcms.blogspot.com/

Living with Congenital Myasthenia – http://www.thecongenic.blogspot.com/

Liz’s Life with CMS – http://cmsliz.blogspot.com/


Myasthenic Kids

Congenital Myasthenia (International Group)