Results 1–20 of 237 for duchenne

Backbench Business - Services for People with Autismbackbench Business: NICE Appraisals: Rare Diseases Treatments (21 Mar 2019)

Stephen Twigg: ...groups and national charities to increase capacity and resources to offer access to clinical trials of new disease-modifying agents. Since 2016, Alder Hey has opened 19 new clinical trials for Duchenne muscular dystrophy alone, enrolling nearly 100 boys in these important trials. By providing excellent, world-class clinical and research expertise and working in partnership with the...

Scottish Parliament: Scottish Powerchair Football Association (6 Feb 2019)

Jackie Baillie: I thank Jeremy Balfour for bringing the debate to the chamber. I declare an interest, as I am the convener of the cross-party group on muscular dystrophy. I want to namecheck John Miller of Action Duchenne for bringing the debate to my attention and phoning my office every two minutes to insist that I speak and to confirm that I would do so. I am therefore delighted to be speaking in the...

Leaving the European Union — [Sir Roger Gale in the Chair] (19 Nov 2018)

Lisa Nandy: ...if we do not take action now to prevent a no-deal Brexit. On the way down here last week, I was stopped at the train station in my Wigan constituency by a mum whose son has a life-limiting illness: Duchenne muscular dystrophy. That young boy, Jack, has become extremely well-known in Wigan. His parents have founded a charity called Joining Jack and have been campaigning for a cure. There is...

Written Answers — Department of Health and Social Care: Muscular Dystrophy: Drugs (1 Nov 2018)

Jared O'Mara: ...cost-effectiveness threshold in the NICE highly specialised technologies appraisal process, what steps he is taking to ensure equity of access to treatment for different subgroups of patients with Duchenne muscular dystrophy.

Written Answers — Department of Health and Social Care: Muscular Dystrophy: Medical Treatments (3 Jul 2018)

Steve Brine: ...available to patients where companies are willing to set prices that fairly reflect the added benefit they bring. NICE is currently developing HST guidance on the use of eteplirsen for treating Duchenne muscular dystrophy.

Disabled People - Motion to Take Note (28 Jun 2018)

Baroness Thomas of Winchester: ...once again. As one person put it to me, “If you are more or less confined within the four walls of your home, your ambitions are diminished to mere survival”. I met a young man of 22 with Duchenne muscular dystrophy when I was in hospital earlier this year. His care package had been scaled right back because of funding cuts. When he asked how he was supposed to manage without full-time...

Health and Social Care: Highly Specialised Technologies Evaluations (19 Jun 2018)

Mary Glindon: There is a risk that new treatments for life-limiting conditions, such as Duchenne muscular dystrophy and spinal muscular atrophy, might not be approved by NICE, so will the Minister meet me and Muscular Dystrophy UK to discuss ways to facilitate access to treatments, as highlighted by the charity’s FastTrack campaign?

Written Answers — Department of Health and Social Care: Muscular Dystrophy: Medical Treatments (31 May 2018)

Jim Shannon: To ask the Secretary of State for Health and Social Care, if he will take steps to ensure NICE evaluates all treatments for duchenne muscular dystrophy by the same criteria.

Written Answers — Department of Health and Social Care: Translarna (31 May 2018)

Steve Brine: The Managed Access Agreement relating to Translarna for the treatment of nonsense mutation Duchenne muscular dystrophy, including a list of signatories, is available at the following link: https://www.nice.org.uk/guidance/hst3/resources

Written Answers — Department of Health and Social Care: Muscular Dystrophy (23 May 2018)

Jim Shannon: To ask the Secretary of State for Health and Social Care, when he last met charities representing the interests of people living with duchenne muscular dystrophy.

Written Answers — Department of Health and Social Care: Muscular Dystrophy (3 May 2018)

Dame Cheryl Gillan: To ask the Secretary of State for Health and Social Care, what assessment he has made of the suitability of the Single Technology Appraisal process for new treatments for patients with Duchenne Muscular Dystrophy.

Brexit: Health and Welfare - Motion to Take Note (29 Mar 2018)

Baroness Thomas of Winchester: ...risk is that the UK not playing any part at all in EMA processes might result in the UK being behind the EU in the queue for approval of new treatments for all kinds of rare diseases. For boys with Duchenne muscular dystrophy, who have only a certain number of days on which they can walk, this will be tragic. In any case, as a result of Brexit, the influence the UK will have on the EMA...

Written Answers — Department of Health and Social Care: Muscular Dystrophy: Medical Treatments (6 Feb 2018)

Daniel Zeichner: To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that patients with Duchenne Muscular Dystrophy have access to new treatments in the NHS.

Written Answers — Department of Health and Social Care: Muscular Dystrophy (5 Feb 2018)

Baroness Masham of Ilton: To ask Her Majesty's Government what assessment they have made of services to monitor and support patients with Duchenne Muscular Dystrophy who are experiencing respiratory decline.

Written Answers — Department of Health and Social Care: Orphan Drugs (5 Feb 2018)

Lord O'Shaughnessy: ...amenable mutation, only if migalastat is provided with the discount agreed in the patient access scheme, and only if enzyme replacement therapy would otherwise be offered. Ataluren for treating Duchenne muscular dystrophy with a nonsense mutation in the dystrophin gene Not known Yes Elosulfase alfa for treating mucopolysaccharidosis type Iva 74-77 Yes Eculizumab for treating...

Data Protection Bill [HL] - Committee (2nd Day) (Continued) (6 Nov 2017)

Baroness Neville-Jones: ...the MPS Society, which supports individuals suffering from mucopolysaccharide disease; Alström Syndrome UK; Prader-Willi Syndrome Association; the MND Association for motor neurone disease; Action Duchenne, which supports those suffering from muscular dystrophy; Save Babies Through Screening Foundation, which focuses on infants with Krabbe disease; the Lily Foundation, which supports...

Written Answers — Department of Health: Muscular Dystrophy (2 Nov 2017)

Julian Lewis: To ask the Secretary of State for Health, what the timetable is for the National Institute for Health and Care Excellence evaluation of the Duchenne muscular dystrophy treatment Exondys 51.

Science and Innovation Strategy - Question for Short Debate (23 Oct 2017)

Lord Mendelsohn: .... That is a very sorry tale. It also reminded me of the story of two individuals who were considering where they were going to locate a life sciences company to establish the overall solution to Duchenne muscular dystrophy. After looking at where they were going to get the best collaboration and the fastest and strongest access to capital, including in this country, they chose Boston in...

Oral Answers to Questions — Prime Minister: Engagements (6 Sep 2017)

Dame Cheryl Gillan: Tomorrow is World Duchenne Awareness Day, which highlights this devastating muscle-wasting condition that affects young men such as my constituent Archie Hill. If, as anticipated, the current development of a more reliable newborn screening test goes ahead, psychological support must be readily available to any affected family. Will the Prime Minister assure families, and Muscular Dystrophy...

Rare Diseases Strategy (28 Mar 2017)

Philip Dunne: ...for use for rare diseases in England, and they are available for use in Northern Ireland. The hon. Member for South Down (Ms Ritchie) asked about that. In particular, Translarna was approved for Duchenne muscular dystrophy, which she referenced. I gently say to the hon. Member for Linlithgow and East Falkirk that those four drugs are not yet available in Scotland—at least, not according...


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