Category Archives: Malawi

Thinking of our international friends on St Andrew’s Day

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.

 

Malawi joins the World Federation of Hemophilia

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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.

I went on Walk RED Malawi 2016 and all I found was a castle!

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Thank you to everyone who joined us for the Extraordinary General Meeting (EGM) and Walk RED Malawi 2016 on Sunday.

Those who attend the EGM, and those who submitted proxy votes, confirmed the vote taken at the AGM. We now acknowledge our international work in our charitable objectives.

The walk itself went well too. Nobody needed a Haemophilia Scotland umbrella and everyone looked great all dressed in red.

As we walked along we talked about what is already being achieved in Malawi through our Malawi Diagnosis Project.  Our fantastic volunteers have just returned from training over 350 healthcare professional in techniques for spotting potential bleeding disorders patients.  Thanks to the project, they now know about the new Haemophilia Clinics which are opening in Malawi.  The patients they refer will have access to laboratory tests and treatment.

You can make a donation to support this extremely important work online or by text.

We’ve set up a campaign on Just Giving so that you know that all of the money you donate will go to the project.  You can also tell us to collect the gift aid for your donation.

To donate three pounds by text send MALA31 £3 to 70070.  If you’d like to give more then just change the amount.  For example, you can donate five pounds by texting MALA31 £5 to 70070.

Thank you for your support.  The money you donate really does go a long way on the ground in Malawi.

 

 

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

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.

Scottish Government backs our Malawi Diagnosis Project

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We are delighted to have been successful in the latest round of the Scottish Government’s Small Grants Programme.  We will be receiving funding for a volunteer led diagnosis project in partnership with our friends in the Haemophilia and Allied Bleeding Disorders Society in Malawi.

The aim of the project is to facilitate access to appropriate treatment for bleeding disorders in Malawi following a laboratory diagnosis.  If the project is successful, more people with a potential bleeding disorder in Malawi will be aware of where they can go for a diagnosis and treatment, and more will have a laboratory diagnosis of their condition and have that diagnosis recorded on a National Haemophilia Register. However most importantly, more people will have access to specialist Haemophilia care and treatment.

Securing funding for the project has been made possible by the work of some dedicated Haemophilia Scotland volunteers, including everyone who took part in our Walk RED Malawi fundraiser last year (watch this space for information about this year’s event).  To make the project a success we will need to continue raising money with events like this.  The text donate details for supporting this project have changed.  To donate just text MALA31 to 70070.

Announcing the grant, Humza Yousaf MSP, Scottish Government Minister for Europe and International Development, said,

The Scottish Government’s Small Grants Programme helps some of the world’s most vulnerable people. It also provides support to Scottish organisations to help them continue to be good global citizens.

Chair, Network of International Development Organisation of Scotland (NIDOS), Jamie Morrison, said,

Small organisations are often uniquely well placed to respond to distinct community needs, and the recognition of their valuable contribution to poverty alleviation and economic growth is warmly welcomed.

A public consultation to help shape Scotland’s International Development Fund in the future is currently underway and will run until 20th May 2016. A number of public discussion events are also taking place across Scotland – event details can be found here.

 

It’s not too late to donate for Walk RED Malawi

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Sabrina is one of our fantastic supporters.  She took some really great photos at Walk RED Malawi and has kindly sent them in.

If you weren’t able to come to the walk and haven’t donated yet it isn’t too late.  Just text FACTOR followed by the amount you’d like to donate (for example, FACTOR £10) to 70660.

All the money we raise will be spent supporting our friends at Haemophilia Malawi.  They are a brand new patient group in Malawi and are keen to campaign for better diagnosis and treatments.  With your support we can really help them make a difference.

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Time to text donate to Walk RED Malawi

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When we all arrived for Walk RED Malawi on Saturday morning the sky was grey, the wind was cold, and the café was shut!  However, as if by magic once we put on our stylish new t-shirt and posed for the group shot the clouds parted and the sun shone all day.

Everyone pitched in manoeuvring the bugs past the trickier bits and we were rewarded with a fantastic view of Bothwell Castle.  There was a lot of things to see; everything from ducks to cows to keep the younger members of the group entertained.

We found somewhere for lunch where Steven, our support driver for the day, could join us and all sat back in the sunshine to enjoy it before pushing on to Glasgow Green.

As well as all the fun and laughter there were some serious discussions as we went along.  It was really interesting to hear about how bleeding disorders have affected different people in Scotland.  We also though about what it must be like for those in Malawi who don’t have any treatment to deal with similar problems.  It was certainly a motivating thought whenever anyone felt like complaining of sore legs!   There was plenty of time to spare a thought for Mike Dorricott and everyone attending his funeral down south on the day too,

We’ve already raised hundreds of pounds towards our Malawi Project and are very grateful to everyone who has given already.  However, we know there are lots of people who’d like to contribute who haven’t had a chance to yet.  To make it as easy as possible we are making next month Malawi May.  All the money we raise through text donations until the end of May will go to the Malawi Project.

To donate £3 to the Malawi Project just text FACTOR to 70660

You can give more by adding an amount. For example texting FACTOR £10 to 70660 will donate ten pounds.

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It’s not to late to join us for Walk RED Malawi this Saturday

Walk RED Malawi 2015

What have you got planned for Saturday?

Wouldn’t you rather be raising money to help people in Malawi get access to better diagnosis, treatment and care for bleeding disorders?

Why not join Walk RED Malawi?  We are following the River Clyde for 11 miles from the David Livingstone Centre in Blantyre to Glasgow Green.  This is the route that David Livingstone used to take when he want to the University which we thought was appropriate given his role in building the connection between Scotland and Malawi which still exists today.  We thought this would be a great way of marking World Haemophilia Day which fell last Friday.

All funds raised will go to the Haemophilia Scotland project in Malawi.  We are helping the newly established patient association in Malawi become a strong voice for people affected by bleeding disorders.

Find out more and register today.

Today is World Haemophilia Day – building a family of support

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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