Hughes Syndrome Foundation

Christmas cards now on sale

noreply@blogger.com (Katharine Hindle) — Fri, 23 Sep 2016 09:59:00 +0000

Our 2016 Christmas cards are now on sale from our website.

We have lots of designs and hope we have something for everyone's taste as this is a great way to raise awareness of APS/Hughes syndrome as well as help sustain our charity.

Thank you if you are able to support us this way.

http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas

Patients' Day now on YouTube

noreply@blogger.com (Katharine Hindle) — Fri, 09 Sep 2016 11:21:00 +0000

We held our annual APS Patients’ Day for our members at St Thomas’ Hospital, London earlier this year in May, and were fortunate to have leading experts and patients discussing a wide range of topics including research, anticoagulation management and testing.
If you would like to listen to or read any of the presentations, please click on the links below:

YouTube: https://www.youtube.com/playlist?list=PLsOlR9d1jRjRp2brAEeECWcudM5J_r-fr
PDF which is free for you to view and download: http://www.hughes-syndrome.org/resources/pdfs/HSF_Patients_day_transcript_2016.pdf

Our charity would like to thank all the speakers for generously giving their time and expertise to help our patient group, and also David Schutt and Frances Dixon who kindly volunteered their professional skills to produce the videos and PDF.

New APS treatment for some

noreply@blogger.com (Katharine Hindle) — Tue, 30 Aug 2016 11:39:00 +0000

The results from the Rivaroxaban in APS trial were published in the Lancet Haematology Journal on 3rd September 2016.

The study was led by University College London Hospital and Dr Hannah Cohen, Lead researcher, consultant in haematology at UCLH has written the following statement for us:

“We have shown in the RAPS trial that rivaroxaban could be an effective, safe and convenient alternative to warfarin in some patients with antiphospholipid syndrome.

We intentionally included in RAPS only antiphospholipid syndrome patients who had venous blood clots requiring standard intensity warfarin, target INR 2.0-3.0. We caution, therefore, that the results do not apply to other groups of patients with antiphospholipid syndrome and venous blood clots who need higher INRs or with blood clots in arteries such as in stroke patients, in whom further studies are required.”

So, to be very clear, if you have had a DVT or PE and have an INR range of between 2.0-3.0, then you now have an alternative treatment to warfarin.

Rivaroxaban is taken in tablet form daily, does not need to be monitored at all and only stays in your system around 24 hours.

Please speak to your doctor if you meet the criteria and wish to switch your medication.

To view the full text of the RAPS paper, please click here: http://www.thelancet.com/pdfs/journals/lanhae/PIIS2352-3026(16)30079-5.pdf

These results are a real breakthrough for some patients, rivaroxaban being the only new medication for APS in over a decade. However, we do know that there is still much work to do and are collaborating in the proposed Rivaroxaban in Stroke and APS trial. We will keep you posted!

APS Congress location changed

noreply@blogger.com (Katharine Hindle) — Fri, 29 Jul 2016 14:39:00 +0000

Due to the increasing safety concerns in Istanbul, the organisers of this year’s International Congress on Antiphospholipid Antibodies have changed the location of the event to Northern Cyprus.

The date remains the same: 21st –24th September 2016 — please visit the website if you need to check on travel information.

May is APS/Hughes syndrome Awareness Month

noreply@blogger.com (Katharine Hindle) — Tue, 26 Apr 2016 08:47:00 +0000

We have been holding the APS/Hughes Awareness Month in May now for fifteen years. This is an annual campaign to increase awareness and each year it grows and grows.

As usual we will be holding our annual national Patients' Day this month, and will be creating a buzz on social media. Last year we had a number of articles generated this way so hope to do the same this year.

If you can help us by raising awareness in any way, please get in touch and let's work together!

Help raise awareness by wearing a wristband

noreply@blogger.com (Katharine Hindle) — Thu, 31 Mar 2016 14:41:00 +0000

We now have silicon charity wristbands for sale at £2 each available from our website with the slogan:

“Don’t be a clot—be APS aware”

A great way of raising awareness with your friends and family.

Sold Out! Join us at the national Patients' Day 2016

noreply@blogger.com (Katharine Hindle) — Wed, 24 Feb 2016 12:53:00 +0000

You are warmly invited to join us at the national Patients' Day being held on the afternoon of Wednesday 18th May 2016 at St Thomas' Hospital in London.

The cost of Patients' Day is £20 for members of the Hughes Syndrome Foundation charity, which include yourself and a guest, and £40 for non-members.

If you want to learn more about this unique opportunity and reserve your place, please visit our website and register online.

Can you help?

noreply@blogger.com (Katharine Hindle) — Fri, 05 Feb 2016 09:54:00 +0000

The European Organisation for Rare Diseases (EURORDIS) is looking for a patient to represent the community of patients and families affected by Catastrophic APS (CAPS) in a panel of experts.

This panel of experts will be drawing up draft guidelines which will be developed into best practice treatment for those with CAPS, so it’s important that we patients have a voice there if possible.

The requirements for the patient representative are:

• you have a good command of English
• you have some experience of CAPS/APS
• feel able to advise on patient views and preferences
• are able to travel to Barcelona, Spain on Wednesday 27th April 2016
• can dedicate a few hours to help draw up the guidelines

However there is no need to be an expert – they need a PATIENT’S view not a doctor’s or healthcare professional.

If you’re interested, please contact urgently Juliette Senecat, Health and Social Projects Manager at EURORDIS: / +33 1 56 53 13 64

15th International Congress on Antiphospholipid Antibodies 2016: patient workshop

noreply@blogger.com (Katharine Hindle) — Wed, 20 Jan 2016 15:22:00 +0000

The International Congress on Antiphospholipid Antibodies (aPL) is held every three years to discuss the recent advances and future directions in aPL and Antiphospholipid Syndrome (APS).

The year the is being held on 21st-24th September 2016 in Istanbul, Turkey and will be chaired by Professor Doruk Erkan.

During the Congress, a Patient Workshop is taking place on 24th September 2016 that will cover the topics listed below and will provide an opportunity for patients to consult with professionals who have expertise in a particular area of antiphospholipid syndrome and lupus:

Basic Immunology for APS and lupus patients
Antiphospholipid syndrome and lupus:
- Clinical Manifestations
- Kidney Disease
- Management
- Damage and Prevention Strategies
- Pregnancy
- Importance of Drug Adherence
Pediatric Antiphospholipid syndrome and lupus

You can register online and read more about the congress by clicking here.

Run the British 10K London Race for us in 2016

noreply@blogger.com (Katharine Hindle) — Mon, 04 Jan 2016 12:26:00 +0000

The British 10K London Run is being held on Sunday 10th July 2016.

This is the world’s greatest road race run and fantastic if you want to cram some quality sight-seeing into your race. The event winds through the heart of London and you will run past many of London’s historic landmarks. Starting at Hyde Park Corner, the route takes you past Trafalgar Square and St Paul’s Cathedral to Tower Bridge, before returning alongside the River Thames.

Registration is £20 and, as places are limited, we ask that you try to raise £100 sponsorship money if possible.

Please email us so we can enter you in the run then send you sponsorship forms, leaflets and a running vest.

Christmas cards now on sale

noreply@blogger.com (Katharine Hindle) — Tue, 13 Oct 2015 14:46:00 +0000

Our 2015 Christmas cards are now on sale from our website.

We have lots of designs and hope we have something for everyone's taste as this is a great way to raise awareness of APS/Hughes syndrome as well as help sustain our charity.

Thank you if you are able to support us this way.

http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas

We have moved!

noreply@blogger.com (Katharine Hindle) — Fri, 02 Oct 2015 15:31:00 +0000

We are pleased to say that our charity office has now moved and we finally have space for volunteers and another member of staff in the future.

Our new address is:

Hughes Syndrome Foundation
The Orchard
White Hart Lane
Basingstoke
Hampshire
RG21 4AF

We also have a new telephone number: 0300 323 9943.

If you'd like to learn more about our new home please visit The Orchard website.

Fundraising statement

noreply@blogger.com (Katharine Hindle) — Thu, 24 Sep 2015 09:38:00 +0000

The charity sector has, understandably, come under fire in recent months for the aggressive fundraising activities adopted by larger charities. These tactics have included employing ‘chuggers’ – charity street muggers who accost potential donors on the high street – as well as direct mailing and cold calling.

Rest assured this is not something the HSF has been doing or will do in the future, nor will we ever sell our mailing lists to outsourced fundraising companies, or anyone else for that matter.

Thanks to our fundraisers, subscribing members, regular donors and supporters, we are able to sustain our charity which makes it possible for us to work hard to win grants and corporate support. Without you, we wouldn’t exist and we do appreciate all the support you are able to give, even if it’s just £2 a month.

Film of Patients' Day now available

noreply@blogger.com (Stephen Blatch) — Tue, 14 Jul 2015 12:05:00 +0000

Thanks to extra funding, we are pleased to be able to share this year's annual Patients' Day with all APS/Hughes patients wherever you may be.

The funding meant we could have a professional film made of our popular event and, thanks to the hard work of volunteer David Schutt, you can view each of the presentations with their accompanying slides and images separately on our You Tube channel, as well as listen to the patient questions and answers.

You can also download a PDF of the full transcript or buy a booklet from our website for £5 plus P&P.

Next year’s date for the national Patients’ Day has been set as Wednesday 18th May 2016, so please book early as it was sold out this year.

Availability of Plaquenil

noreply@blogger.com (Katharine Hindle) — Wed, 10 Jun 2015 09:39:00 +0000

We understand that many patients who take hydroxychloroquine under the trade name of Plaquenil have been told by their pharmacist that it has been 'discontinued'.

The charity, Lupus UK, have carried out some research and issued the following statement:

After speaking with Sanofi-Aventis Medicine's Information Department (the manufacturers of Plaquenil) we have learned that Plaquenil has now been 'de-branded' to generic but that the same formulation of the drug will be available through pharmacies if they order Hydroxychloroquine through Zentiva (the sister company to Sanofi).

If your pharmacist has any difficulty obtaining the Hydroxycloroquine with the same formula from Zentiva the product descriptions is: "HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (Product Code) is 1201730.

If for any reason they cannot find the product on their system they can ring the customer service line on 01483 505515.

British Medical Journal patient story

noreply@blogger.com (Katharine Hindle) — Mon, 13 Apr 2015 11:55:00 +0000

We are delighted that Tracy Jallow's patient story has finally been published in the British Medical Journal.

It was a long wait, but we got there in the end!

Needless to say that the BMJ is one of the most widely read medical journals, so this will really help raise awareness of APS/Hughes syndrome.

It is a shame that Tracy had to go through much before a diagnosis was made, but we are thankful she shared her experience so that other people can, hopefully, be diagnosed more quickly.

Thanks to Dr Heidi Lempp for helping us get this published, and also Professor David D'Cruz for giving his expert opinion in the paper.

Please click here to read the full article.

Join us at the national Patients' Day 2015

noreply@blogger.com (Katharine Hindle) — Thu, 08 Jan 2015 12:42:00 +0000

You are warmly invited to join us at the national Patients' Day being held on the afternoon of Wednesday 13th May 2015 at St Thomas' Hospital in London.

The cost of Patients' Day is £20 for members of the Hughes Syndrome Foundation charity, which include yourself and a guest, and £40 for non-members.

If you want to learn more about this unique opportunity and reserve your place, please visit our website and register online.

House of Lords debate

noreply@blogger.com (Katharine Hindle) — Thu, 08 Jan 2015 07:30:00 +0000

We would like to bring your attention to the first ever short debate held in the House of Lords on antiphospholipid (Hughes) syndrome.

The question posed by Baroness Drake was: “what actions are Her Majesty’s Government taking to raise awareness of the autoimmune condition antiphospholipid syndrome (APS) amongst general practitioners and throughout the National Health Service”.

She was supported by our charity’s wonderful Chair, Baroness Estelle Morris, with Lord Hunt arguing for and Earl Howe against.

You can either read the transcript of the debate here:

http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/150309-0003.htm#15030931000088

or watch the video here:

http://www.parliamentlive.tv/Event/Index/ddb0a58f-8b9e-491a-a47c-6db1d9ea9fe4

The debate was held on Monday 9th March 2015 at 8.02 pm so, if you are watching the video, please drag the timer slide to 8.02.27 to find the beginning.

Needless to say, we are delighted that APS/Hughes is on the agenda at the Lords, and one of the outcome of the debate is that the government now supports the need for a UK prevalence study.

We will continue to campaign for earlier testing for women with miscarriage, to have all the tests for antiphospholipid antibodies included in thrombophilia screens in every hospital in the UK, and testing for anyone under the age of 50 who has a stroke, DVT or heart attack.

Help end medicine poverty

noreply@blogger.com (Katharine Hindle) — Wed, 07 Jan 2015 14:21:00 +0000

Our charity is a member of the Prescription Charges Coalition who work tirelessly to help people with long-term conditions such as Hughes syndrome/APS.

The NHS prescription charge has long been a contentious issue. This charge has been abolished in Scotland, Wales and Northern Ireland, leaving patients in England alone in the UK in having to pay for their prescriptions. Although there are many exemptions from the prescription charge, these appear illogical and unfair.

A survey by the BMJ in 2015 found that almost 90% of health professionals say prescription charges deter patients from collecting medicines, yet still the government refuses to change the system in England.

Please help medicine poverty by signing this petition.

Charity Christmas Cards Now on Sale

noreply@blogger.com (Stephen Blatch) — Tue, 14 Oct 2014 11:28:00 +0000

Our 2014 charity Christmas cards are now on sale from our website. We have seven new designs and hope we have something for everyone's taste as this is a great way to raise awareness of APS/Hughes syndrome as well as help sustain our charity.

Thank you if you are able to support us this way.

World Thrombosis Day 13th October 2014

noreply@blogger.com (Stephen Blatch) — Tue, 07 Oct 2014 15:03:00 +0000

We are pleased to be part of the World Thrombosis Day global movement that aims to raise awareness of the risks and prevalence of thrombosis. This is clearly something that means a lot to anyone with APS/Hughes syndrome.

World Thrombosis Day is being held on Monday 13th October - please click here to learn more about it and how you can help raise awareness.

15th International Congress on Antiphospholipid Antibodies

noreply@blogger.com (Stephen Blatch) — Mon, 04 Aug 2014 11:17:00 +0000

The International Congress on Antiphospholipid Antibodies (aPL) is held every three years to discuss the recent advances and future directions in aPL and Antiphospholipid Syndrome (APS).

The next meeting is going to be held on 21st-24th September 2016 in Istanbul, Turkey and will be chaired by Professor Doruk Erkan.

The 15th International Congress on aPL, with the support of Turkish Society of Rheumatology, will cover a very comprehensive program including:

Evidence-based state-of-the art presentations from internationally recognized physicians and scientists
Task Force discussions and presentations covering the controversial aspects of diagnosis and management
Oral and poster submitted abstract presentations
Meet the professor sessions
Patient sessions guided by leaders in the field

You can register online and read more about the congress by clicking here.

Annual Patients' Day 2014 YouTube recording

noreply@blogger.com (Stephen Blatch) — Fri, 06 Jun 2014 12:34:00 +0000

Our annual Patients' Day was a roaring success this year, with 83% of the attendees rating it as 'excellent'.

However, we know that lots of you can't make it due to work/family/health/geographic commitments, so are pleased to let you know that you can now listen to a free You Tube recording of the speakers along with the slides of their presentations.

We hope you find it useful:

https://www.youtube.com/playlist?list=PLsOlR9d1jRjQMQJLidbvD4aQfBiUWOA7U&feature=mh_lolz

Attend our national Patients' Day

noreply@blogger.com (Stephen Blatch) — Thu, 06 Feb 2014 16:11:00 +0000

You are invited to join us at the national Patients' Day being held on the afternoon of Wednesday 14th May 2014 at St Thomas' Hospital, London.

The cost of Patients' Day is £20 for members of the Hughes Syndrome Foundation charity, to include you and a guest, and £40 for non-members.

If you want to learn more about this unique opportunity and reserve your place, please visit our website and register online.

BBC1 Casualty 01/02/2014 features APS

noreply@blogger.com (Stephen Blatch) — Mon, 03 Feb 2014 16:26:00 +0000

Thanks to actress Holly Matthews, the popular BBC1 series Casualty featured a storyline in which APS was prominent. It was made clear it was a serious blood clotting disorder and this storyline dealt with pulmonary embolism, miscarriage and the possibility of it being hereditary.

Click to see the episode Blood is Thicker than Water: http://www.youtube.com/watch?v=_d0ThdYx7uY&feature=youtu.be&hd=1