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In the Media

 

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

Neurologists speak out:
http://www.bmj.com/content/341/bmj.c6466.full.html?ijkey=1S5JVHzx2XcY4D0&keytype=ref

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

 

Other press on 3,4 DAP/ Firdapse:

http://www.guardian.co.uk/society/2010/nov/17/drugs-companies-exorbitant-profits-nhs

http://www.express.co.uk/posts/view/197587/Vital-drugs-made-too-expensive-by-EU-rules

http://www.guardian.co.uk/society/2010/nov/17/drugs-companies-exorbitant-profits-nhs

http://www.hospitaldr.co.uk/blogs/dr-blogs/orphan-drug-pricing-warrants-investigation


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

http://www.telegraph.co.uk/news/6537454/Baby-RB-will-be-allowed-to-die-after-father-withdraws-opposition.html

Baby RB and Finley’s story

http://www.telegraph.co.uk/health/children_shealth/6570302/Baby-RB-when-is-it-right-to-allow-a-child-to-die.html


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/

Facebook

Myasthenic Kids

Congenital Myasthenia (International Group)