22q11 Syndrome APPG

First Registered: 30/07/2015 • Last updated on: 10/03/2021

Official Page

To increase recognition and understanding of the Syndrome across policy makers and the medical profession. Eventually aiming for, once diagnosed, life-long health strategy for sufferers.

Note: All-Party Parliamentary Groups (APPGs) are informal, cross-party groups formed by MPs and Members of the House of Lords who share a common interest in a particular policy area, region or country. APPGs have no official status within Parliament.


This content was generated for your convenience by Parallel Parliament and does not form part of the official record.
Recent Documents related to 22q11 Syndrome

1. DiGeorge Syndrome (Review and National Health Service Duty) Bill 2017-19
05/06/2018 - Bills

Found: State to conduct a review into DiGeorge (22q11 deletion) syndrome; to require the National Health Service

2. Screening tests for you and your baby: easy guides
19/06/2020 - Public Health England (PHE)
- View source

Found: Screening for Down™s syndrome, Edwards™ syndrome and Patau™s syndrome An easy guide to screening tests

3. Down’s syndrome screening: risk calculation software requirements
27/10/2020 - Public Health England (PHE)
- View source

Found: Guidance Down’s syndrome screening: risk calculation software requirements

4. Down's Syndrome Awareness Month
05/10/2020 - Early Day Motions

Found: That this House celebrates World Down's Syndrome Awareness Month, which commences on October 1st 2020;

5. Screening tests for you and your baby: description in brief
05/09/2019 - Public Health England (PHE)
- View source

Found: cell and thalassaemia Down™s syndrome, Edwards™ syndrome and Patau™s syndrome 11 physical conditions (20-week

Latest Documents
Recent Speeches related to 22q11 Syndrome

1. Down Syndrome Awareness Month
22/10/2020 - Commons Chamber

1: mention a bit more later. This year’s theme for Down Syndrome Awareness Month is “what holds me back”, which - Speech Link
2: work to raise awareness of the needs of Down’s syndrome children in places such as Carshalton and Wallington - Speech Link
3: people across the UK and around the world mark Down Syndrome Awareness Month. Among other things, it is an - Speech Link

2. Hypermobility Syndromes: Healthwatch Calderdale’s Report
07/10/2019 - Commons Chamber

1: people who are described as having a hypermobility syndrome.The most common of these syndromes is hypermobility - Speech Link
2: consideration. People suffering from hypermobility syndrome feel that they have to fight to be believed, fight - Speech Link
3: people—specifically those with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder—are not receiving - Speech Link

3. DiGeorge Syndrome (Review and National Health Service Duty)
05/06/2018 - Commons Chamber

1: conduct a review into DiGeorge (22q11 deletion) syndrome; to require the National Health Service to publish - Speech Link

4. Learning Disabilities Mortality Review
15/05/2019 - Commons Chamber

1: who died had “learning disabilities” or “Down’s syndrome” given as the reason not to resuscitate them. - Speech Link
2: doctors have recorded learning disability or Down’s syndrome as the reason for a “do not attempt cardio-pulmonary - Speech Link
3: That applies particularly to people with Down’s syndrome. We must proclaim that, in this country, there - Speech Link

5. Learning Disabilities Mortality Review
15/05/2019 - Lords Chamber

1: we have heard that disabilities such as Down’s syndrome are being used by some doctors as a reason not - Speech Link
2: one dies from a learning disability or Down’s syndrome. The reason for the annual report is to identify - Speech Link
3: kind—in particular, learning disability or Down’s syndrome—should ever be used as a reason for a DNR, and - Speech Link

Latest Speeches
Recent Questions related to 22q11 Syndrome
1. Irlen Syndrome
asked by: Mike Amesbury
23/01/2020
... what plans his Department has to improve recognition of Irlen Syndrome within the NHS.

2. Tourette's Syndrome
asked by: Jim Shannon
04/12/2020
... by (a) age and (b) gender.

3. Rett Syndrome
asked by: Jim Shannon
15/01/2020
... how many people have been diagnosed with Rett syndrome in each of the last five years.

4. Down's Syndrome
asked by: Fiona Bruce
20/03/2019
... what plans she has to address the effect of her Department's description of Down's Syndrome as an abnormality on (a) people with Down's Syndrome who read or hear that description and (b) familities who read or hear that description of a member of their family either before or after birth.

5. Down's Syndrome
asked by: Fiona Bruce
19/03/2019
...To ask the Secretary of State for Work and Pensions what research her Department has conducted on life for people with Down's Syndrome in the 21st century.

Latest Questions
9 Current APPG Officers
David Duguid Portrait
David Duguid
Chair & Registered Contact
Conservative - Banff and Buchan
Joined: 28th September 2017
No other APPG Memberships
Lord Farmer Portrait
Lord Farmer
Officer
Conservative - Life peer
Joined: 24th February 2020
1 APPG Membership
Christians in Parliament
Suzanne Webb Portrait
Suzanne Webb
Officer
Conservative - Stourbridge
Joined: 24th February 2020
Baroness Eaton Portrait
Baroness Eaton
Officer
Conservative - Life peer
Joined: 24th February 2020
3 APPG Memberships
Devolution , Local Government , Retail Crime
Contact Details

Registered Contact:

David Duguid MP, House of Commons, London, SW1A 0AA. Tel: 0207 219 2819.

Email: david.duguid.mp@parliament.uk

Public Enquiry Point:

Julie Wootton, Max Appeal 15 Meriden Avenue, Stourbridge, West Midlands DY8 4QN. Tel: 0300 999 2211

Email: julie@maxappeal.org.uk

Secretariat:

Max Appeal acts as the group's secretariat. http://www.maxappeal.org.uk/

Group's Website:

http://maxappeal.org.uk/awareness/appg_-_all_party_parliamentary_group

Benefits in Kind
Date
15 Jan 2020
Source
Max Appeal
Description
Secretariat   From : 15/01/2020 To : 14/01/2021
Value
£1,501
Date
13 Sep 2018
Source
Max Appeal
Description
Secretariat   From : 13/09/2018 To : 12/09/2019
Value
£1,501
Date
13 Sep 2017
Source
Max Appeal
Description
Secretariat   From : 13/09/2017 To : 12/09/2018
Value
£1,501
Date
23 Jun 2016
Source
Max Appeal
Description
Secretariat   From : 23/06/2016 To : 22/06/2017
Value
£12,001
Date
23 Jun 2015
Source
Max Appeal
Description
Secretariat   From : 23/06/2015 To : 22/06/2016
Value
£1,501

No direct financial benefits are on record for the 22q11 Syndrome APPG

Former APPG Officers
Heidi Allen Portrait
Heidi Allen
Secretary
Liberal Democrat - Former Member for South Cambridgeshire
Joined: 28th September 2017
Departed: 5th November 2019
No other APPG Memberships
Melanie Onn Portrait
Melanie Onn
Vice Chair
Labour - Former Member for Great Grimsby
Joined: 28th September 2017
Departed: 5th November 2019
No other APPG Memberships
Andrea Jenkyns Portrait
Andrea Jenkyns
Vice Chair
Conservative - Morley and Outwood
Joined: 24th November 2016
Departed: 2nd May 2017
4 APPG Memberships
Italy , Loan Charge , Music , Social Mobility
Alistair Burt Portrait
Alistair Burt
Vice Chair
Conservative - Former Member for North East Bedfordshire
Joined: 24th November 2016
Departed: 2nd May 2017
No other APPG Memberships
Baroness Stuart of Edgbaston Portrait
Baroness Stuart of Edgbaston
Officer
Non-affiliated - Life peer
Joined: 24th November 2016
Departed: 2nd May 2017
No other APPG Memberships
Lindsay Hoyle Portrait
Lindsay Hoyle
President
Speaker - Chorley
Joined: 30th July 2015
Departed: 12th October 2016
1 APPG Membership
Rugby League
Robert Neill Portrait
Robert Neill
Secretary
Conservative - Bromley and Chislehurst
Joined: 30th July 2015
Departed: 12th October 2016
Baroness Butler-Sloss Portrait
Baroness Butler-Sloss
Vice Chair
Crossbench - Life peer
Joined: 30th July 2015
Departed: 12th October 2016
David Crausby Portrait
David Crausby
Vice Chair
Labour - Former Member for Bolton North East
Joined: 30th July 2015
Departed: 12th October 2016
No other APPG Memberships
Lord Hoyle Portrait
Lord Hoyle
Treasurer
Labour - Life peer
Joined: 30th July 2015
Departed: 12th October 2016
2 APPG Memberships
Gibraltar , Rugby League