Raises awareness of all types of muscular dystrophy and neuromuscular conditions and promotes links between parliament, individuals and families affected by these muscle-wasting conditions, charities, scientists, health professionals and decision-makers.
1. Muscular dystrophy and driving
18/02/2019 - Driver and Vehicle Licensing Agency (DVLA)
- View source
Found:
2. Muscular Dystrophy
30/07/2015 - APPGs
Found:
3. Muscular Dystrophy UK - written evidence
15/11/2017 - Inquiry: PIP and ESA Assessments - Work and Pensions Committee
- View source
Found:
4. APPROVAL FOR DUCHENNE MUSCULAR DYSTROPHY TREATMENT, TRANSLARNA
18/04/2016 - Early Day Motions
Found:
5. ACCESS TO DUCHENNE MUSCULAR DYSTROPHY TREATMENT, TRANSLARNA
19/10/2015 - Early Day Motions
Found:
1. Disabled Facilities Grants (Review)
14/07/2020 - Commons Chamber
1: in the all-party parliamentary group for muscular dystrophy, which looks at the difficulties faced by - Speech Link
2. Rare Diseases Strategy
28/03/2017 - Westminster Hall
1: consideration. There are some 60 different types of muscular dystrophy, and 1,000 children and adults for every - Speech Link
2: range of different things—including that of Muscular Dystrophy UK. I hope hon. Members find that report - Speech Link
3: implementation. Muscular Dystrophy UK has said that it would have a major impact on drugs for muscular dystrophy - Speech Link
3. Pompe Disease
31/10/2017 - Commons Chamber
1: suffer from the disease receive support from Muscular Dystrophy UK—I put on the record my thanks to it for - Speech Link
2: disease. Like others, I have been contacted by Muscular Dystrophy UK, and rare diseases come up here often - Speech Link
3: is absolutely right to praise the work of Muscular Dystrophy UK. When I was a Back-Bench MP, I was a member - Speech Link
4. NICE Appraisals: Rare Diseases Treatments
21/03/2019 - Commons Chamber
1: needs of people with rare diseases such as muscular dystrophy, phenylketonuria and cystic fibrosis; and - Speech Link
2: the same problems. The all-party groups for muscular dystrophy and for cystic fibrosis are two that come - Speech Link
3: suffering from cystic fibrosis, but those with spinal muscular atrophy, Batten disease and PKU, to name but a - Speech Link
5. Spinal Muscular Atrophy
25/07/2019 - Commons Chamber
1: thought I had better stick to a script.Spinal muscular atrophy is a genetically inherited neuromuscular - Speech Link
2: families of SMA patients, Muscular Dystrophy UK, TreatSMA, Spinal Muscular Atrophy UK and many clinicians - Speech Link
3: outlined very movingly the symptoms of spinal muscular atrophy, which has been raised before in this - Speech Link
asked by: Jim Shannon
23/05/2018
... when he last met charities representing the interests of people living with duchenne muscular dystrophy. 2. Muscular Dystrophy
asked by: Cheryl Gillan
03/05/2018
... what assessment he has made of the suitability of the Single Technology Appraisal process for new treatments for patients with Duchenne Muscular Dystrophy. 3. Muscular Dystrophy
asked by: Baroness Masham of Ilton
05/02/2018
...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. 4. Muscular Dystrophy
asked by: Julian Lewis
02/11/2017
... what the timetable is for the National Institute for Health and Care Excellence evaluation of the Duchenne muscular dystrophy treatment Exondys 51. 5. Muscular Dystrophy
asked by: Julian Lewis
02/11/2017
... if he will make it his policy to ensure that NHS England and Sarepta Therapeutics conduct pricing negotiations at an early stage in the evaluation of Exondys 51.
5 Current APPG Officers
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Bahá'í Faith , Britiish Offshore Oil and Gas Industry , Disability , Fair Fuel for UK Motorists and UK Hauliers , Family Business , Fire Safety and Rescue , Hadrian's Wall , Healthy Homes and Buildings , Illicit Trade , Kurdistan Region in Iraq , Obesity , Parkinson's , Pro-Life , Religious Education , Skin , Vaping , Youth Affairs
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 30th July 2015Animal Welfare , Antibiotics , Autism , Bahá'í Faith , Cannabis: Harmful Effects on Developing Brains , Chalk Streams , Electric Vehicles , Environment , Epilepsy , Eye Health and Visual Impairment , Food Banks , Gardening and Horticulture , Golf , Hong Kong , Rare, Genetic and Undiagnosed Conditions , Sepsis , Skin , Space , Women in Parliament , Woods and Trees
Learning Disability
Access to Medicines and Medical Devices , Adult Social Care , Alevis , Bahá'í Faith , Beer , Blood Cancer , Carbon Monoxide , Cerebral Palsy , Christianity in the Holy Land , Cleaning and Hygiene , Coastal Communities , Dairy , Diabetes , Disability , Eggs, Pigs and Poultry , Energy Studies , Equitable Life Policyholders , Eye Health and Visual Impairment , Farming , Health in all Policies , Healthy Homes and Buildings , Heart Valve Disease , Hong Kong , International Freedom of Religion or Belief , Malawi , Marine Energy , Mentoring , Obesity , Pakistani Minorities , Pancreatic Cancer , Pigeon Racing , Pro-Life , Professional Sales , Respiratory Health , Shooting and Conservation , Suicide and Self-Harm Prevention , Terminal Illness , Veterans , Vulnerable Groups to Pandemics , Wood Panel Industry
Acquired Brain Injury , Building Communities , Carbon Monoxide , Future of Retail , Housing and Social Mobility , Loneliness , Microplastics , Net Zero , Parks and Green Spaces , Rail in the North , Rare, Genetic and Undiagnosed Conditions , Respiratory Health , State Pension Inequality for Women , Suicide and Self-Harm Prevention , Valproate and other Anti-Epileptic Drugs in Pregnancy
Contact Details
Show/HideRegistered Contact:
Mary Glindon MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 3000.
Email: mary.glindon.mp@parliament.uk
Public Enquiry Point:
Jonathan Kingsley, Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU. Tel: 020 7803 4839
Email: j.kingsley@musculardystrophyuk.org
Secretariat:
Muscular Dystrophy UK acts as the group's secretariat. http://www.musculardystrophyuk.org/
Benefits in Kind
Show/Hide12 Feb 2021
Muscular Dystrophy UK
Secretariat From : 12/02/2021 To : 11/02/2022
£3,001
12 Feb 2020
Muscular Dystrophy UK
Secretariat From : 12/02/2020 To : 11/02/2021
£3,001
18 Jul 2019
Muscular Dystrophy UK
Secretariat From : 18/07/2019 To : 17/07/2020
£3,001
18 Jul 2018
Muscular Dystrophy UK
Secretariat From : 18/07/2018 To : 17/07/2019
£3,001
1 Jan 2018
Muscular Dystrophy UK
Secretariat From : 01/01/2018 To : 31/12/2018
£3,001
1 Jan 2017
Muscular Dystrophy UK
Secretariat From : 01/01/2017 To : 31/12/2017
£3,001
1 Jan 2016
Muscular Dystrophy UK
Secretariat From : 01/01/2016 To : 31/12/2016
£3,001
1 Jan 2015
Muscular Dystrophy UK
Secretariat From : 01/01/2015 To : 31/12/2015
£3,001
No direct financial benefits are on record for the Muscular Dystrophy APPG
Former APPG Officers
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Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 30th July 2015Departed: 20th December 2017
Animal Welfare , Antibiotics , Autism , Bahá'í Faith , Cannabis: Harmful Effects on Developing Brains , Chalk Streams , Electric Vehicles , Environment , Epilepsy , Eye Health and Visual Impairment , Food Banks , Gardening and Horticulture , Golf , Hong Kong , Rare, Genetic and Undiagnosed Conditions , Sepsis , Skin , Space , Women in Parliament , Woods and Trees
Paul Maynard
Vice Chair
Conservative - Blackpool North and Cleveleys
Joined: 30th July 2015Departed: 2nd May 2017
Paul Monaghan
Vice Chair
Scottish National Party - Former Member for Caithness, Sutherland and Easter Ross
Joined: 30th July 2015Departed: 2nd May 2017
David Anderson
Chair & Registered Contact
Labour - Former Member for Blaydon
Joined: 30th July 2015Departed: 12th October 2016
Lord Walton of Detchant
Secretary
- Former Member for
Joined: 30th July 2015Departed: 16th March 2016