Category Archives: WFH

Let us know if you would like to attend the WFH Congress in Glasgow, May 20-24.

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Don’t miss out on a once-in-a-lifetime opportunity!

The 2018 WFH Congress is coming to Glasgow.

This is the first time that Congress has been hosted in the UK and is a special and unique opportunity for you to attend this worldwide gathering. It’s the largest international meeting for the global bleeding disorders community!

You will meet industry experts, hear the latest from the pharmaceutical companies, meet other people from the international bleeding disorders community and so much more.

We think this is something you would not want to miss!

We currently haven’t got a budget for the registration costs or accommodation costs of attending the Congress. We ask if you need a bit of financial assistance and if you would like to attend for the whole of Congress, or if you are thinking about attending, please let us know by completing the below form by March 21. We can’t promise anything, but we are hoping to get funding so we can get as many people attending as possible.

This is an opportunity not to be missed!

 

#PressForProgress for women with bleeding disorders on #IWD2018

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Today is International Women’s Day and Haemophilia Scotland is highlighting the important work of women around the world who are fighting for diagnosis and access to treatment for women with inherited bleeding disorders such as von Willebrands.  Working together on gender equality in treatment is integral to our partnerships with our friends in Kenya and Malawi.

To watch the full videos of this panel discussion of 5 different von Willebrand disease outreach programs and the keys to their success, and for hundreds more bleeding disorder resources, go to http://eLearning.wfh.org.

The Haemophilia Scotland Women’s Group is proud to be hosting the Women’s Booth at the WFH Congress in Glasgow this May.  The booth will be showcasing amazing work from all over the world and providing a place for women with bleeding disorders to meet and exchange ideas.

Find out more about,

 

Make a difference for women at Congress

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The Women’s Booth at the World Federation of Haemophilia Conference in May this year is, as some of you know, being hosted by Haemophilia Scotland.  Many of you are already aware and participating in our ongoing quilt project which will be displayed there.

Working in partnership with Glasgow Haemophilia Centre, we thought it would also be a nice gesture to recognise that no matter how little we have, some women and girls in the world have much less, particularly of the basic things we come to take for granted.

In many of the international communities, item such as pants, socks, sanitary wear, deodorant, shampoo, toothpaste, toothbrushes etc are luxury and commonly non existent items for many women.

We would like to collect some of these items and make them available to anyone who needs them during the conference and anything unused thereafter be sent to women and girls in Malawi and Kenya as part of Haemophilia Scotland’s ongoing programmes in these countries.

If you can and would like to donate any of the items mentioned above (or any other small items you can think may be useful) which could go into a small “goodie” bag for these girls and women, these are being collected at the Glasgow Haemophilia Centre and the Haemophilia Scotland Office.

Let’s make life a wee bit more comfortable for these girls and women with a great Scottish welcome!

If you wish any further information regarding this, please contact Nancy Brodie at the Glasgow Haemophilia CCC on 0141 211 5127.

 

Thinking of our international friends on St Andrew’s Day

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Russian Visit

Richard Lyle MSP and the then First Minister, Alex Salmond, meet the Russians delegation at the Scottish Parliament during their stay in Scotland. Also featured are Haemophilia Scotland Chairman Bill Wright and our Honorary President, Susan Warren, who organised the Russian group’s visit and was our Vice-Chair at the time. 

St Andrew isn’t just the patron state of Scotland, he is also the patron saint of Barbados, Romania, Russia, and the Ukraine.

So today seems like a good moment to look back to 2013 when Haemophilia Scotland played host to a group of about a dozen young Russian men with bleeding disorders.

They were successful finalists in a competition where the prize was a two-week visit to the UK. The once-in-a-lifetime opportunity enabled about many of them to travel abroad for the first time.

They spent time in London and Scotland, meeting other people affected by bleeding disorders and enjoying new experiences. While in Scotland they visited the Scottish Parliament in Holyrood, where they met First Minister Alex Salmond (pictured above). In Inverness they took part in a traditional ceilidh. Susan Warren looked after the group throughout their time in the UK and made them very welcome.

We were a relatively new charity at the time but have maintained our commitment to playing our part in the international family of bleeding disorders charities.  That is one of the reasons we are so excited to have the WFH Congress coming to Glasgow in May next year and are delighted that our Women’s Group will be hosting the Women’s Booth at the conference.  We are particularly proud of our recent Malawi Diagnosis Project with our friends in the Society of Allied Bleeding Disorders in Malawi too.

If you’d like to know more about how bleeding disorders are experienced in other countries, these are the patient organisations in those who share Scotland’s national saint.

 

Inspiration aplenty at Glasgow Practical Sewing Session

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We had a fantastic time yesterday at the practical sewing session in Glasgow where a flurry of ideas and inspiration floated about in abundance.

For inspiration, we used the eclectic fabrics from the D’Ambrosio family, quilting magazines and the corners of our collective imaginations!

You don’t need to be an expert at quilting to participate in this collaborative project. It can really be as simple as finding a printed panel and personalising it yourself.

We’ve extended the deadline to take part in the Quilt Project to November 17, so it’s not too late to get involved!

The next practical sewing session will be held on level 3 at our office in Edinburgh on November 11, between 11:00am-2:00pm. Register for the session now. 

Don’t worry if you can’t make the session as we will organise another session for Glasgow and Edinburgh in January, before the January 31 deadline.

 

Malawi joins the World Federation of Hemophilia

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SHAD becomes a NMO of WFH cropped.jpg

We are delighted that our friends in the Society of Haemophilia and Allied Disorders in Malawi continue to go from strength to strength.  They were accepted as an Associate Member of the World Federation of Hemophilia (WFH) at Global Congress in Orlando in July.

WFH President, Alain Weill, said,

I am extremely pleased to welcome the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to the WFH family of National Member Organisations (NMOs). The accreditation of SHAD as an NMO is the result of relationship building with Malawi by WFH staff and volunteers that dates back to 2013. I am thrilled that this effort bore fruit, and that we will continue to work closely with SHAD to support their efforts to improve care for patients with hemophilia and related bleeding disorders in Malawi. I would also like to extend my thanks and gratitude to Haemophilia Scotland for all the excellent support they continue to provide to SHAD and its staff.

Haemophilia Scotland CEO, Dan Farthing-Sykes, said,

Haemophilia Scotland is honoured to have played a part in supporting our friends at SHAD and are delighted to see them get this international recognition.  Working with SHAD to deliver our joint Malawi Diagnosis Project has show just how much can be achieved when organisations like ours come together.  We look forward to many more years working together to improve the diagnosis, treatment, and care of people with bleeding disorders in Malawi. Anyone wanting to support this work can donate to the project directly using Just Giving.

The WFH constitution prohibits Haemophilia Scotland from becoming an NMO ourselves but we work closely with the WFH as part of our international work.  We are particularly excited that the WFH Congress will be in Glasgow in 2018 and will be working with The Haemophilia Society to make that a success.

World Haemophilia Day 2016 #WHD2016 marked by launch of Malawi Diagnosis project and awareness raising at science festivals

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Yesterday (17 April) was World Haemophilia Day.  Our sister organisations all over the world were marking the day with an amazing range of activities.

Here at Haemophilia Scotland, we like to use World Haemophilia Day to raise the profile of bleeding disorders in Scotland and of the work we are doing to improve treatment and care in the rest of the world.

This year we are launching our Diagnose Malawi Appeal and are raising awareness at science festivals.

Diagnose Malawi Appeal

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We are working in partnership with the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to improve diagnosis, treatment, and care in their country.

All over the world 1 in 10,000 babies is born with Haemophilia A.  However, despite having a population of well over 16 million there was nobody in Malawi with a laboratory diagnosed bleeding disorder when the project started.

We have received funding from the Scottish Government to run the Malawi Diagnosis Project with SHAD.  There will be a public awareness campaign in Malawi, and training for hospital staff, to try and find suspected cases of bleeding disorders.  New clinics will then offer testing, and where appropriate, treatment.

As part of our funding application we pledged to raise some of the money we need through community fundraising.  Money spent on this project goes a long way.  For example, running a single test will cost £15.  By the end of the project we hope that between 216 and 360 people will have been tested. Our first fundraising target of £1,500 is the equivalent of paying for the first 100 test. However, your money will be used to support the whole project.

The easiest way to donate to the appeal is on Just Giving. Alternatively, you can donate fifteen pounds by texting ‘MALA31 £15’ to 70070.  If you’d like to give a different amount just change the amount in your text. We will be posting more about the project during our ‘Malawi May’ when there will also be a cultural event to find out more about the county we are working with.

Following the success of Walk RED Malawi last year there will be another event this year.  Details are being finalised. Please put the 17th of July in your diary. If you are interested in finding out more please email Emma Black to be put on the Walk RED Malawi mailing list.

Science Festivals

To raise awareness of bleeding disorders in Scotland we have been taking part science festivals.  We worked with Blackwell’s Bookstore to run a very successful crime scene investigation event as part of the Edinburgh International Science Festival.  All day, amateur sleuths were cracking clues to solve a murder, while improving their knowledge of bleeding disorders.

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Countdown to World Haemophilia Day 2016 continues #WHD2016

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To mark World Haemophilia Day (17 April) this year, the World Federation of Hemophilia (WFH) are launching a series of videos about their humanitarian work around the world.

In this first, introductory video, they stress that there is more to their work than trying to take the clotting factor treatments that are available in the most developed parts of the world and making it available more widely.  Treatment must be supported by strong patient groups, properly staffed Haemophilia Centres, diagnostics facilities, and commitment from Governments.

This is the approach that Haemophilia Scotland is taking with our own Malawi Diagnosis Project in partnership with our friends in Malawi, the Society for Haemophilia and Allied Disorders. We are working together to provide people in Malawi with laboratory diagnosis and access to specialist Haemophilia clinics.  Well be posting more information about this project over the coming days and weeks.

The Glasgow Haemophilia Centre pulls out all the stops for World Haemophilia Day

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Glasgow Cake WHD 2015

Our CEO, Dan Farthing-Sykes, had a fantastic time with patients and staff at the Glasgow Haemophilia Centre on World Haemophilia Day.

Although a little camera shy, the staff had transformed the centre into a vintage tea room and were looking fantastic in vintage clothes and red wigs!

It was great to see so many people coming along and really getting into the spirit.  There was lots of delicious home backing which meant that there was no danger of anyone going home hungry.

The table was creaking under the weight of all the tasty treats.

The table was creaking under the weight of all the tasty treats.

We are very grateful to the Centre for putting on such a fantastic event – we can’t wait to see how they top it next year!

Today is World Haemophilia Day – building a family of support

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World Haemophilia Day 2015 HS

The 17th of April every year is World Haemophilia Day.  This year’s global theme of ‘building a family of support’ is something we are strongly in favour of at Haemophilia Scotland.  Our mentoring and events programmes are all about helping the community come together in Scotland to provide mutual support.

Yesterday, we attended the European Haemophilia Consortium World Haemophilia Day event in Dublin.  We really appreciate this chance to come together as a family of patient organisations and talk about the big issues we all face – in this case the importance of patients in tendering for clotting factor products.

Today, we are delighted to have been invited to join the team at the Glasgow Haemophilia Centre for their World Haemophilia Day celebrations.  Glasgow is famed for its hospitality – as everyone who comes to the World Federation of Hemophilia Congress in 2018 will discover.  Today that hospitality means we will be enjoying a vintage tea party!

On Saturday the 25th we are holding our own World Haemophilia Day Event.  A dedicated band of fundraisers are “Walking RED Malawi” from Blantyre to Glasgow Green.  They are walking in tribute of the historic ties between Scotland and Malawi, first forged by David Livingstone who used to walk the same route to attend University.  All funds raised will support our work with the newly established patient association in Malawi.  It is not too late to sign up if you would like to take part.

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