22q11 Syndrome APPG

First Registered: 30/07/2015 • Last updated on: 06/10/2021

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 for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome: NIPT summary information
01/07/2021 - Public Health England (PHE)
- View source

Found: Screening for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome: NIPT summary information

3. 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

4. Down’s syndrome, Edwards’ syndrome and Patau’s syndrome screening pathway requirements specification
21/06/2021 - Public Health England (PHE)
- View source

Found: Guidance Down’s syndrome, Edwards’ syndrome and Patau’s syndrome screening pathway requirements

5. Screening for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome: non-invasive prenatal testing (NIPT)
26/04/2021 - Public Health England (PHE)
- View source

Found: Screening for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome: non-invasive prenatal testing

Latest Documents
Recent Speeches related to 22q11 Syndrome

1. Children with Genetic Conditions: Specialist Support
15/06/2021 - Lords Chamber

1: take to ensure that children with (1) 22q11 deletion syndrome, and (2) other genetic conditions, receive - Speech Link
2: absence of a diagnosis or late diagnosis of 22q11 deletion syndrome means an inevitable impact on children’s - Speech Link
3: second most prevalent genetic disorder after Down’s syndrome. I will take back to colleagues at the Department - Speech Link

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

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

3. Covid-19: People with Neurological Conditions
27/05/2021 - Grand Committee

1: the population is reported—twice that of Down’s syndrome and almost six times that of cystic fibrosis. - Speech Link
2: traumatic brain injury. Postural tachycardia syndrome, which I have, causes a wide range of autonomic - Speech Link

4. Speech, Language and Communication Support for Children
04/07/2018 - Westminster Hall

1: deletion syndrome—again, a bit of a mouthful—which is sometimes known as DiGeorge syndrome. For the purposes - Speech Link
2: chair of the all-party parliamentary group on 22q11 syndrome. I have had dealings with a constituent who - Speech Link

5. Business of the House
13/05/2021 - Commons Chamber

1: group on 22q11 syndrome, which is a genetic disorder best described as the most common syndrome not heard - Speech Link

Latest Speeches
Recent Questions related to 22q11 Syndrome
1. Tourette's Syndrome
asked by: Conor McGinn
21/06/2021
... what funding his Department invested through the National Institute for Health Research into research on Tourette’s syndrome in each year since 2010.

2. Tourette's Syndrome
asked by: Conor McGinn
21/06/2021
... what proportion of Health Education England’s clinical psychology intake has opted to undertake a specialist placement focusing on Tourette’s syndrome in each of the last five years.

3. Tourette's Syndrome
asked by: Conor McGinn
29/06/2021
... (b) the North West region and (c) England.

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

5. Irlen Syndrome
asked by: Mike Amesbury
23/01/2020
... what plans his Department has to improve recognition of Irlen Syndrome within the NHS.

Latest Questions
APPG Supplied Content

APPGs can register with Parallel Parliament and submit files and articles to be placed here.

Parallel Parliament offers the facility for APPGs to submit written content and files, which are made available through this page.

Submitters can draft and edit publications, and either release them on demand, or schedule release for a future date.

Both text content and attached files submitted through this facility is indexed by our website, and made available through both the search function and relevant e-mail alerts. Any of our users registered for an alert which matches your content, will receive a link making them aware of its publication.

If you wish to register as an authorised representative of the 22q11 Syndrome APPG and use this facility, click below

9 Current APPG Officers
Suzanne Webb Portrait
Suzanne Webb
Chair & Registered Contact
Conservative - Stourbridge
Joined: 24th February 2020
Lord Farmer Portrait
Lord Farmer
Officer
Conservative - Life peer
Joined: 24th February 2020
2 APPG Memberships
Christians in Parliament , Dying Well
Lisa Cameron Portrait
Lisa Cameron
Officer
Scottish National Party - East Kilbride, Strathaven and Lesmahagow
Joined: 24th February 2020
Baroness Eaton Portrait
Baroness Eaton
Officer
Conservative - Life peer
Joined: 24th February 2020
Contact Details

Registered Contact:

Suzanne Webb MP, House of Commons, London, SW1A 0AA. Tel: 0207 219 3000.

Email: suzanne.webb.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 2021
Source
Max Appeal
Description
Secretariat   From : 15/01/2021 To : 14/01/2022
Value
£1,501
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
David Duguid Portrait
David Duguid
Chair & Registered Contact
Conservative - Banff and Buchan
Joined: 28th September 2017
Departed: 21st April 2021
No other APPG Memberships
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
3 APPG Memberships
Italy , 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
Crossbench - Life peer
Joined: 24th November 2016
Departed: 2nd May 2017
1 APPG Membership
Wilton Park
Lindsay Hoyle Portrait
Lindsay Hoyle
President
Speaker - Chorley
Joined: 30th July 2015
Departed: 12th October 2016
2 APPG Memberships
Gibraltar , Rugby League
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