16th may - national patients meeting

[kathyD64]

Hi i joined this forum in june and so have never attended any meetings before. Could someone kindly tell me about the meeting on the 16th or point me in the right direction please have requested week off from work as keen to attend. Many thanks kathy xx

[paddyandlin]

Hi Kathy,

This is the biggest event that the Hughes Syndrome Foundation runs each year and it is run in APS month (May). The event is a UK National Event and open to all patients who have APS, each event has been diffrent in that they normally have Prof Hughes Talking about APS, anther APS specalit doc talking about pregnancy another about INR a presentation from a patient as i said each year the subject is diffrent the core subject is not which is APS.

The event is not just a presnetiation it is also a Q&A session and is a fantastic opertunity to meet other people who have APS and some of the peoiple who you talk to on this Forum. So ffar as i am aware this years event dat is set 16th May but the subject matter has not, normally the venue is at St Thomas's but again this has not been confirmed and there is normally a cost for a ticket to go to the event, this covers the cost of the event and all the information you get afterwards again this will be confirmed soon.

What will happen is a notice will go up on this forum confirming all the details and how you can book, all the people i have spoken to who have gone have ranted about it, you get a lot of info, see the key players in APS and meeet up with people who you talk to on these groups what more can you ask for.

[Hidden]

What Paddy said really! So far I have three Profs speaking - about the brain, best treatment and new research, one of my trustees has also made contact with someone who should be able to tell us about life insurance (am chasing that one) and I am trying to get a GP to tell us their side of things but this is proving difficult. Self-testing as ever will be on the agenda (probably with Alere) as will the Q&A. Refreshments will depend on Sanofi Aventis making a donation - have asked, so fingers crossed.

The date is set for 16th May at Governor's Hall at St Thomas starting at 2pm. If our Worldpay testing system was working properly, I would have had the registration page loaded yesterday but am now caught up with London Bridge GP Liaison for the meeting on 4th Feb (not for patients, GPs only) and have new website to write tomorrow, but am hoping to get the event up there by the end of the week now depending on my coding skills! Just love Javascript variables and HTML forms ... not Once it's ready I will add an HSF blog.

Hope to see you there.

[Storky]

Hi Kate

You mentioned the LB GP Liaison on the 4th Feb. Can you tell me if this is for certain invited GP's or can any GP come along?

Thanks

[Storky]

Hi again Kate

Just thought...I am sure you know about this but we use Eventbrite to register our events and sell tickets. There is a medical section. It was pretty effortless. Don't know how it compares with your method. Here is a link.

eventbrite.co.uk/?ref=sem0b...

[kathyD64]

thanks paddy & kate. sounds a very informative and interesting event would be a shame not to attend so count me in xx

[paddyandlin]

Thats great hopefully you will meet a number of people who are on this forum

paddy