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

• http://www.northamptonchron.co.uk/news/health/brave_lee_all_set_for_his_big_swim_1_2321715

• http://www.thisisleicestershire.co.uk/news/kids-nasty-illness-shall-cope-8211-lives/article-2787006-detail/article.html

Jeans for Genes Day 2010:

• http://www.thesussexnewspaper.com/news/news-flash/2096-against-all-odds.html
• http://www.shorehamherald.co.uk/news/courageous_shoreham_youngster_makes_it_to_school_1_1214700
• http://www.chroniclelive.co.uk/north-east-news/evening-chronicle-news/2010/09/22/youngster-boosts-jeans-for-genes-appeal-72703-27319141/

Ellie’s parents are running the great north run:

• http://www.journallive.co.uk/north-east-news/todays-news/2010/08/23/parents-running-great-north-run-for-daughters-rare-condition-61634-27116130/?sms_ss=facebook

Click on the picture below to read the full story in JournalLive.co.uk

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 ...

• http://www.chroniclelive.co.uk/north-east-news/evening-chronicle-news/2010/09/07/couple-tell-of-girl-s-cruel-breathing-condition-72703-27217918/

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/