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NICE decision for use of Translarna - a criminal act. The decision this week from NICE in the UK to deny boys with Duchenne Muscular Dystrophy the use of the drug Translarna is criminal. This first use of a genetic therapy for Duchenne has been approved by the EMA. And other European countries have already agreed to fund the use of Translarna. In Scotland one young person, Cormac Fegan. Has been granted funding for Translarna. Have raised the issue with the Prime Minister this week at PMQ's. Is the decis...

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NICE decision for use of Translarna - a criminal act. The decision this week from NICE in the UK to deny boys with Duchenne Muscular Dystrophy the use of the drug Translarna is criminal. This first use of a genetic therapy for Duchenne has been approved by the EMA. And other European countries have already agreed to fund the use of Translarna. In Scotland one young person, Cormac Fegan. Has been granted funding for Translarna. Have raised the issue with the Prime Minister this week at PMQ's. Is the decis...

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79 | dmd79.blogspot.com Reviews

https://dmd79.blogspot.com

NICE decision for use of Translarna - a criminal act. The decision this week from NICE in the UK to deny boys with Duchenne Muscular Dystrophy the use of the drug Translarna is criminal. This first use of a genetic therapy for Duchenne has been approved by the EMA. And other European countries have already agreed to fund the use of Translarna. In Scotland one young person, Cormac Fegan. Has been granted funding for Translarna. Have raised the issue with the Prime Minister this week at PMQ's. Is the decis...

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NICE decision for use of Translarna - a criminal act | 79

http://dmd79.blogspot.com/2015/10/nice-decision-for-use-of-translarna.html

NICE decision for use of Translarna - a criminal act. Saturday, 17 October 2015. The decision this week from NICE in the UK to deny boys with Duchenne Muscular Dystrophy the use of the drug Translarna is criminal. This first use of a genetic therapy for Duchenne has been approved by the EMA. And other European countries have already agreed to fund the use of Translarna. In Scotland one young person, Cormac Fegan. Has been granted funding for Translarna. The current decision by NICE, to be further reviewe...

2

Open letter to Sir Nick Partridge Chair of CPAG | 79

http://dmd79.blogspot.com/2014/12/open-letter-to-sir-nick-partridge-chair.html

Open letter to Sir Nick Partridge Chair of CPAG. Tuesday, 2 December 2014. Dear Sir Nick Partridge. So it is vital that the CPAG committee understand the need to fund Translarna and also other new medicines when they become licensed. Saul suggested that I set up a petition. Https:/ you.38degrees.org.uk/p/translarna. And I’m delighted to say that the Duchenne Community and many others (including the dog Elvis! Are supporting our call to fully fund this treatment. Families have been waiting a long time for...

3

79 | 79

http://dmd79.blogspot.com/2014/11/79.html

Thursday, 27 November 2014. In the 1850's Guillaume-Benjamin-Amand Duchenne (de Boulogne) discovered Muscular Dystrophy. In fact, the original name of this disease was Duchenne Muscular Dystrophy, named in his honor. But it took until 1986, for the gene dystrophin to be cloned, until we had a real scientific basis for understanding the mechanisms underlying the severe muscle wasting first seen by Duchenne over 130 years before. From Dr. Annemieke Aartsma-Rus. At first it was hoped that the dystrophin gen...

4

Funding Translarna means we still have hope | 79

http://dmd79.blogspot.com/2014/12/funding-translarna-means-we-still-have.html

Funding Translarna means we still have hope. Monday, 1 December 2014. Was Rachel being a little paranoid when she said something was wrong? Ben wouldn’t do the things she had read about avidly both during pregnancy and after he was born. He missed milestones and we even moved house so that he wouldn’t have to go to the tiny village school – we thought he needed pushing more – so we moved and thought we’d solved a problem for our ‘laid back’ happy little boy. In 2013 an extension trial finally started aga...

5

Carmeseal-MD | 79

http://dmd79.blogspot.com/2014/12/carmeseal-md.html

Thursday, 11 December 2014. An early access programme was announced for Carmeseal-MD™ (Poloxamer 188, NF) recently ( http:/ www.phrixuspharmaceuticals.com/news.php. Pharmaceuticals announces European Access Program for CarmesealMD™ (P-188 NF) for. Patients with Duchenne muscular dystrophy". Treat NMD and UPPMD have published this very good guideline for families http:/ www.treat-nmd.eu/dmd/carmeseal/. So it might be the case here that patients can find clinicians that Phrixus are willing to offer Carmese...

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79

NICE decision for use of Translarna - a criminal act. The decision this week from NICE in the UK to deny boys with Duchenne Muscular Dystrophy the use of the drug Translarna is criminal. This first use of a genetic therapy for Duchenne has been approved by the EMA. And other European countries have already agreed to fund the use of Translarna. In Scotland one young person, Cormac Fegan. Has been granted funding for Translarna. Have raised the issue with the Prime Minister this week at PMQ's. Is the decis...

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