Sticky Blood-Hughes Syndrome Support
8,346 members8,520 posts

It Gives Us Great Pleasure To Make The Following Announcement

Please read the following press release. More information on how this is going to link to this Forum will follow later.

bit.ly/2pG8RJ5

48 Replies
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Wow this is a big announcement!!! Is this a new charity completely or in place of APS Support UK?

I'll certainly look forward to it all going live.

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It is a brand new registered charity so fully functional. We are working on the website and other social media outlets and this platform will be its official support forum.

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Well done x

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Thanks

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This is wonderful well done to all involved. Anything that spreads awareness can only be a bonus

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Thank you.

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Great news. x

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This sounds like great news, I'm newly diagnosed and finding the forum a great source of information already.

Ray

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Wonderful, Im so pleased.

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Greetings from Spain, thanks for putting our announcement on. MaryF

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Greatings from Sweden!

Kerstin

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Great all of you are so devoted to us and give so freely of your time. Thank you administrators, a big KUDOS to all of you. What does it mean in terms of getting new information? I also saw on twitter that *Professor was talking about two? LMWH , one being better than the other but couldn't find addl info when tried looking around twitter, but honestly I am still not very good at it. Prof Hughes must also be thrilled as it is termed" international" now. So hopefully all doctors will heed his advise. So happy and fortunate for all of us. I certainly think the age of computer technology is helping us... never thought I would be saying that🤝Thanks again!

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* meant Prof Hunt was talking about LMWH

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I asked Prof Hunt if there was any preference for any particular LMWH for treating HS when not using Warfarin. Her answer was that there is no preference. Not sure why others are therefore saying that Clexane is better than Fragmin. Sometimes its a personal preference but certainly not a clinical one. Hope that clears that one up for you.

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Sure does thanks for asking about it.Cindy

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Hoorah excellent news can't wait for it to be up and running.

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Thanks Sue x

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When does the website go live APsnotFab ? X

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As soon as it's finished! Pressure on the IT guys! In the meantime it's not stopping us arranging other things.......

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Thank you, and once again thank you Lynn for the hours and hours you have put into this. MaryF

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😘😅

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Congratulations! To you and to all of us!

( I must confess that since I am in the US, I often feel guilty because my tax dollars do not go to support this wonderful forum.) Thanks for all that you do!

( and on my so far three trips to Scotland I try to pay back by picking up trash. -- Not much, but it makes me feel like I'm contributing something. )

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Your contributions on here Gina are all that we need. Thank you.

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Will this be in competition with our sister charity.. APS support? Seems a waste of energies to me.

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No competition whatsoever we will just be getting on with our work! MaryF

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Fab news, thank you for your hard work and I look forward to hearing more 😀 Xxx

🌟⭐️🌟⭐️🌟⭐️🌟⭐️

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Thanks. xx

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This is excellent news! It is very exciting to think that the charity will be able to reach out to patients and professionals on an international level. It certainly feels like there is a light at the end of a very long tunnel for me.

What pleases me most of all is that you have chosen to name the charity in honour of Professor Graham Hughes. Without his hard work and dedication where would some of us be now?

Congratulations to all of you for your hard work and dedication.

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Thank you for such a lovely comment, I hope you are doing well. We miss you on here! x

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Thank you for your kind words, and your unstinting support of our work over the years. MaryF

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Congratulations and thank you! The support provided here, that reaches so many people in very scary times is priceless.

I'm really looking forward to seeing the new charity launched.

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Thank you we will keep you posted.

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We appreciate all the hard work the admin have put into this forum and into helping with The Graham Hughes International Charity for Hughes (Antiphospholipid) Syndrome. I look forward to the sharing of information and to continue raising international awareness through my Facebook support groups. Well done Lynn and Mary xx 👍🏻😃

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Thank you so much Hazel, we look forward to working with and sharing with you to! X

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Yes it is great to be able to work with you Hazel, and thank you so very much for your unstinting support. MaryF

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Fantastic news.

And thanks to all involved. It can be lonely world dealing with illness and things like this make things less scary and provides patients with reassurance and support when needed. Never underestimate the strength that these forums and the charity will give people like myself. You truly are a life line.

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Thank you, we don't which is why we work so hard to support everyone.

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Thanks for this. Can I ask re the relationship between GHIC and APS Support UK - will the two be connected in any way or is this a separate, second charity offering support?

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There is no direct connection, we are new and the only global charity for Hughes Syndrome. We will support and educate, raise awareness and contribute to research globally. It is no different to the situation that the many Cancer Charities or other diseases with multiple organisations have! We look forward to working with every organisation that benefits and furthers the needs of people who need help.

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Thanks for clarifying.

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Yes I agree with the clarification, this is a new venture which we are delighted to be a part of. MaryF

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This is fantastic news and Prof G Hughes deserves. I am so pleased. I am seeing him Wednesday this week.

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Any date for the launch of the website yet APsnotFab ?

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Its a secret!

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That's no fun !! 😜

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It would be no surprise either if I told you !!😏

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Well done what a wonderful achievement this is life saving news..........

CONGRATULATIONS and thank you for all the hours of hard work put into this project.

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Brilliant-well done.

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