The Alpha-1 Alliance coalition of Alpha-1 UK patient groups and clinical experts who have come together to campaign for better services for Alpha-1 patients will be launching their policy report at a Parliamentary seminar on Alpha-1, which will take place Tuesday, 10th December, 3pm-5pm at Portcullis House in Westminster. The Secretariat of the Alliance have issued the following statement…….
The format of the meeting will be a panel discussion, including Mark Pawsey MP, Ravi and Ray Overton as a patient representative. As you are aware, we have also ask for a representative of the Government to join the panel. The discussion will focus on the outcome of our policy report and the recommendation’s we have developed for better services for Alpha-1 patients.
We also think that is important to have as many patients as possible at the event to demonstrate the unmet medical need of Alpha-1 patients to politicians. We would therefore be grateful if you could invite your members to the event. We are aware that it will be cold and lots of Alphas will not be willing to travel that close to Christmas. However, it is very important to have those patients who are able and interested at the event. I have included the details of the event below and would be grateful if you can ask your members to RSVP to the Alliance’s email address:info@alpha-1-alliance.org.uk. Please also note that patients need to come the Portcullis House 30min before the event to allow enough time to pass security.
Thank you for your help and please just give the Secretariat a call if you have any questions.
Parliamentary Seminar on Alpha-1 antitrypsin deficiency
15:00 – 17:00, Tuesday 10th December 2013
Attlee Suite, Portcullis House
Speakers:
Mark Pawsey MP
Dr Ravi Mahadeva, Consultant Respiratory Physician, Addenbrooke’s Hospital
Ray Overton, Alpha-1 patient
The Alpha-1 Alliance is a coalition of Alpha-1 patient groups and clinical experts, who have come together to campaign for better services for Alpha-1 patients. It is chaired by Dr Ravi Mahadeva, with support from other expert physicians from different parts of the UK. Patient group members include Alpha-1 Awareness UK, Alpha-1 Support Group and Alpha-1 Advocacy and Action.
At the seminar the Alpha-1 Alliance will launch a policy report, which will include recommendations for better access to services and therapy for Alpha-1 patients. The format of the launch will be a panel discussion including patients and senior clinicians, which will be chaired by Mark Pawsey MP.
Please come along to support our campaign! Please RSVP to Alpha-1 Alliance’s Secretariat at info@alpha-1-alliance.org.uk / 020 3021 1624.