APPG for thalassaemia
All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities.
Our APPG group for thalassaemia aims to raise awareness of this rare condition and encourage policy changes to improve services, quality of life and survival rates for people living with a form of thalassaemia.
We hope to do this by educating and encouraging Members of Parliament achieve this aim by engaging with parliamentary colleagues, the government and health professionals to raise awareness relating to the conditions and needs of patients. Frequent meetings will be carried out to discuss upcoming plans, raising issues in thalassaemia and other important topics to ensure we are ready to debate with members of parliament.
We also have an annual general meeting (AGM) which is a yearly gathering between the shareholders of the UKTS, members of the UKTS and its board of directors. The aim of the AGM is to provide the trustees and/or officers the opportunity to explain their management of the charity or organisation to the members. It also provides the members with an opportunity to ask questions before voting on business items on the agenda.
Our upcoming plans that we intend to address this year includes:
- Tackling the inequalities and inconsistencies within services that people with thalassaemia face across the UK.
- Highlighting the issues that individuals living with thalassaemia face when applying to the DWP for Personal Independent Payment.
- Shining a light on the unfair process that the rare disease community faces during Technology Appraisals.
- Addressing the unfairness of Prescription Charges for adults with thalassaemia
|Chair||Bambos Charalambous MP – Southgate and Enfield|
|Vice Chair||Bob Blackman MP- Harrow East|
|Vice Chair||Alberto Costa MP- South Leicestershire|
|Vice Chair||Kate Osamor MP- Edmonton|
|Vice Chair||Fabian Hamilton MP- Leeds NE|
|Vice Chair||Taiwo Owantemi MP- Coventry NW|
|Vice Chair||Judith Cummings MP- Bradford South|
|Vice Chair||Barry Gardiner MP- Brent North|
|Vice Chair||Catherine West MP- Hornsey and Wood Green|
|Vice Chair||Feryal Clark MP- Enfield North|