To increase awareness in Parliament of rare, genetic and undiagnosed conditions and help to ensure that patients and families affected by those conditions have access to appropriate care and support.
Found: Written evidence - Genetic Alliance UK ORK0279Written evidence from Genetic Alliance UKExecutive SummaryAccess
2. Implementing the UK Strategy for Rare Diseases
24/03/2017 - Parliamentary Research
Found: 24 March 2017 Implementing the UK Strategy for Rare Diseases By Sarah Barber Jacqueline Baker A debate
3. Rare, Genetic and Undiagnosed Conditions
16/03/2016 - APPGs
Found: increase awareness in Parliament of rare, genetic and undiagnosed conditions and help to ensure that patients
The UK Strategy for Rare Diseases
Found: for patients with rare
diseases: Implementing a strategy
A report from the UK Rare Disease Forum
1. UK Rare Diseases Framework
24/03/2021 - Westminster Hall
1: House has considered the implementation of the UK Rare Diseases Framework.It is a pleasure to serve - Speech Link
2. Rare Diseases Strategy
28/03/2017 - Westminster Hall
1: has considered implementing the UK Strategy for Rare Diseases.It is a pleasure to serve under - Speech Link
3. Genetic Haemochromatosis
03/07/2019 - Westminster Hall
1: debate on genetic haemochromatosis. I chair the all-party parliamentary group for genetic haemochromatosis - Speech Link
2: on to some of the debilitating consequences of genetic haemochromatosis, which include arthritis, joint - Speech Link
3: Celtic origin leads to some people referring to genetic haemochromatosis as the Celtic curse, a term that - Speech Link
4. Phenylketonuria and Kuvan
22/03/2018 - Commons Chamber
1: co-chair the all-party group on rare, genetic and undiagnosed conditions, but I raise this issue primarily - Speech Link
2: approach new medicines and treatments, especially for rare diseases. Britain is a world leader in science, - Speech Link
5. Oral Answers to Questions
07/05/2019 - Commons Chamber
1: couple of weeks ago, so that those with acute conditions and with clinical support for using medicinal - Speech Link
2: taking to increase awareness of rare, genetic and undiagnosed conditions in mental health services.  - Speech Link
3: being taken through the implementation of the UK rare disease strategy. The Department published an update - Speech Link
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If you wish to register as an authorised representative of the Rare, Genetic and Undiagnosed Conditions APPG and use this facility, click below
Liz Twist MP, House of Commons, London, SW1A 0AA. Tel: 0207 219 2221.
Public Enquiry Point:
Farhana Ali, Genetic Alliance UK. Tel: 0300 124 0441
Genetic Alliance UK acts as the group's secretariat. https://www.geneticalliance.org.uk/
No direct financial benefits are on record for the Rare, Genetic and Undiagnosed Conditions APPG