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CALLING ALL ALPHA 1 ANTITRYPSIN DEFICIENCY PATIENTS!!!!!!!!!

Margs profile image
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A1AD patients, carers, family and friends please attend our event in London. RSVP on the Alpha 1 Alliance UK website. Invite your MP via the Alliance website to attend even if you cannot be there. We need to show medical need and interest so please do your best to be there. alpha-1-alliance.org.uk/pol...

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Margs
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hufferpuffer profile image
hufferpuffer

Good Morning Marg, I would love to go , I think it's on Dec 10th but alas I can not afford the train fare, its almost £ 100 from where I live but I have asked my local MP. I do not know if he's attending as I had no reply.

I hope the meeting goes well, huff :) x

Margs profile image
Margs in reply tohufferpuffer

Hufferpuffer, Aww at least the thought is there and thank you for contacting your MP.

operatic profile image
operatic

Please tell me time. Date and place so I can tell my MP. Thanks

operatic profile image
operatic

This A1AD deficiency is also relevant for Hereditary Spherocytosis patients and there are several members of my family with this disease. 2 have already died from Pneumococal Septicaemia. I also have Primary Biliary Cirrhosis an auto-immune liver disease (PBC). As I am disabled and am also caring for my very sick husband with COPD and Diabetes 2 I will not be able to come to this event in London. PLEASE could you mail me any leaflets writeups information etc? I can email you my address or phone you if I know your contact details. Thanks.

Tuesday 10th December, 3-5 pm, Attlee Suite in Portcullis House, located next to the Westminster Tube Station, London

Launch of the new Alpha-1 policy report, developed to demonstrate the unmet medical needs of Alpha-1 patients across England.

The launch event in Parliament will include a panel discussion, chaired by Mark Pawsey MP. The panel members will include the Chair of the Alpha-1 Alliance, Dr Ravi Mahadeva, and people with Alpha-1 antitrypsin deficiency.

Alpha-1 patients and their families are welcome to attend the report launch, but we ask that they RSVP in advance to info@alpha-1-alliance.co.uk.

We look forward to hearing from you!

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