On 9 June 2021, we attended a virtual APPG (All Party Parliamentary Group) meeting on Rare, Genetic and Undiagnosed Conditions about newborn screening.
What is an All Party Parliamentary Group?
All Party Parliamentary Groups (APPGs) are informal, cross-party interest groups of MPs and Peers interested in a particular issue. APPGs do not have any power to make laws and are not funded by Parliament. There are a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media and sports.
About the APPG on Rare, Genetic and Undiagnosed Conditions
The aims of the group, agreed by members, are to increase awareness of rare, genetic and undiagnosed conditions in parliament and help ensure that patients and families affected by these conditions have access to appropriate care and support.
The APPG provides a useful forum for parliamentarians to meet patients and families, who are often vital to converting complicated and abstract debates to the everyday reality of people’s lives. It also provides opportunities for MPs to learn about the many similar issues facing patients and their families. The APPG helps to give patients affected by rare, genetic and undiagnosed conditions a voice in parliament.
Genetic Alliance UK provides the secretariat for the APPG on Rare, Genetic and Undiagnosed Conditions.
Why newborn screening?
The UK is far behind most European countries for how many conditions are screened for at birth using the heel prick test. Genetic Alliance UK launched a report on the reasons for this, which can be found here. This report is currently endorsed by over forty of their patient organisation members.
Nickie Aiken MP, in collaboration with The Archangel MLD Trust, launched a petition to call for a review into newborn screening in the UK. You can sign here. We urge you to sign this petition, as a review would help children born in the UK have the best possible start in life.
Several members of the LSD collaborative gave moving accounts of life with a rare condition and the desperate need for an earlier diagnosis. The MPS Society is working with Genetic Alliance UK to improve access to newborn screening.
The meeting was very insightful and the speakers concluded it was crucial that children with a rare disease get an early diagnosis so they can get the best possible treatment.
Speakers included:
· Liz Twist MP, Chair, All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions
· Professor Simon Heales, Great Ormond Street Hospital
· Professor Laurent Servais, MDUK Oxford Neuromuscular Centre
· Dr Will Evans, Niemann-Pick UK
· Amanda Mortensen, Batten Disease Family Association
· Karen Harrison, Alex, The Leukodystrophy Charity
· Georgina Morton, ArchAngel MLD Trust
You can now watch the recording below.
The official minutes from the meeting can be found here.
