Is Antiphospholipid syndrome an official rare disease or not?

[swirl]

Good morning to everyone!! I would like to ask a question to the organisers of the foundation. Is Antiphospholipid syndrome considered as an official rare disease? I only find contradictory information. Here in Spain, we are trying to create a National Assotiation of patients and I need to know if we should include our syndrome in an event of rare diseases or similar . thank you very much!!

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Hi Swirl

Responding on behalf of the Hughes Syndrome Foundation, no APS is not classed a rare disease here in the UK. I definitely know this as we've tried to get grants from a number of Rare Diseases NGOs in the past, only to be told that it is not classed a rare disease.

Do you know about the Spanish Sindrome Anitosfolipidoco based in Spain? They are part of the Spanish Lupus group and have translated most of our literature. Their website is: cocemfecantabria.org/1/46/4...

Good luck with creating the register.

Kate Hindle

Manager

[swirl]

Thank you very much Kate !! I´ll write an email to this group because in their website I can only read about LUPUS. There is another group of LUPUS + ANTIPHOSPHOLIPID In Madrid, but We would like to create a new one focused on Antiphospholipid syndrome because sometimes is eclipsed by Lupus and some of us, fortunately, only have primary APS. It is strange to know that is not considered a rare desease when most of APS patients tell me that they feel alone and doctrors (except their speciallyst) don´t know their condition.

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Yes, I agree about having a specific APS group. I too have primary APS and do get fed up being labelled with having lupus when I clearly don't have it. Of course, there is a lot of cross over so it's important that we stay in touch with the lupus charities but, as you say, it can sometimes eclipse APS - in the US the Lupus Foundation of America doesn't seem to recognise APS as being separate from lupus! I wouldn't mind but the symptoms are so widely different for each condition ...

I don't think it's a rare disease, just that it wasn't discovered until the 1980s which is not long in medical terms hence the lack of awareness about it. There are so many different rare diseases out there I think it's difficult for general doctors to keep up with the enormous volume of information. We are targeting GPs at the moment and I have just produced a new GP leaflet - it's been so popular I'm having to do a reprint already, which is a good thing

[swirl]

Would you mind to send me a copy by email?? It would be great to have one!!

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I'm just about to put it on the website and will alert people on our enews updates list this afternoon:

hughes-syndrome.org/resourc...