See you at our events in 2018!

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As Christmas and the New Year rapidly approach (blink and you’ll miss it!)  we’re thinking ahead to 2018 and have some dates for your diaries.

2018 will be a big year, particularly with the World Federation of Haemophilia (WFH) Congress being hosted in Glasgow in May. You can find the dates for Congress as well as the exciting events we’ve organised on our Events page. All of our events are FREE so we would love to see as many of you as possible at them in 2018!

If you would like to suggest an event or think there is something missing, just let us know. We want everyone to be part of the events programme.

 

Ground-breaking severe Haemophilia A gene therapy results offer hope of new future

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Today’s report, AAV5–Factor VIII Gene Transfer in Severe Hemophilia A, in the New England Journal of Medicine offers the prospect of people with severe Haemophilia A taking a single injection and achieving clotting factor levels of mild or moderate patients.  This could mean huge reductions in use of clotting factor replacement products.

Dan Farthing-Sykes, CEO of Haemophilia Scotland responded saying,

These results are a huge achievement and offer someone born with Haemophilia today the prospect of a life without regular infusions.  I am struck by the bravery of all of those who have volunteered to be part of this and similar gene therapy trials.  Without their courage the amazing results achieved in studies like this would not be possible. Our thanks and congratulations go to everyone involved in this important work.

Many Haemophilia Scotland members will be excited by the prospect of a step-change in treatment.  However, as with all new medicines, they will want to see these results repeated in larger studies and be assured that the treatment is as safe as possible, as well as being free from harmful side effects.

This breakthrough will require clinicians, patients, and Governments to work together to make sure patients are able to benefit fully.  We will need to know if the therapy will continue working for the rest of a patient’s life. What levels of standard treatment might still be needed to keep all patients bleed-free or to respond to trauma? Gene therapy might also require new and innovative funding models to make sure that all the patients who might benefit are able to access it.

Read more reactions at,

Meeting with Damian Green ‘positive and cordial’

Going in

Bill Wright, Chair of Haemophilia Scotland, and Lynne Kelly, Chair of Haemophilia Wales on their way into the Cabinet Office to meet The Rt Hon Damian Green MP, who is the minister responsible for establishing the contaminated blood and blood products public Inquiry.

Bill Wright, Chair of Haemophilia Scotland, today joined representatives from groups campaigning on the contaminated blood and blood products campaign issue across the UK in London to meet The Rt Hon Damian Green MP, First Secretary of State, to discuss the upcoming Public Inquiry.

There were two meetings (morning and afternoon) and organisations were limited to a single representative so that there would be time for everyone who attended to speak. Bill attended on behalf of Haemophilia Scotland in the afternoon meeting which included representatives from,

The meeting was told to expect an announcement on who would be the Chair and on any panel before Christmas.  No specifics on the Terms of Reference (ToR) were discussed but they are likely to be published in draft with the opportunity to comment on them in early 2018.  The Cabinet Office were asked to provide funding for the relevant legal teams to be able to assist affected people with feeding into that process.

Bill highlighted the importance of having a Panel as described by Section 3 (1) (b) of the Inquires Act as an Inquiry being conducted “by a chairman with one or more other members.”  This sort of panel would have shared responsibility for conducting the Inquiry and signing off the report (as detailed in Section 24 (4) of the Inquiries Act).  We consider this is vital to having a fast paced Inquiry with the appropriate expertise and openness while avoiding the difficulties we faced during the Penrose Inquiry.

To help emphasise the importance of engaging with all affected people around the UK, Bill also referred to Section 18 (1) of the Inquiries Act to argue for the proceedings to be streamed live online.  This is vital to make sure that those who cannot travel because of poor health, finances, geography, or other responsibilities can “see and hear a simultaneous transmission of proceedings at the inquiry.”

Commenting straight after the meeting Bill Wright, Chair of Haemophilia Scotland, said,

We had a positive and cordial meeting. Damian Green confirmed a Chair will be announced before Christmas but further members of the panel may not be announced until the new year.

There was general agreement on the pace of proceedings from now on. It was acknowledged that the next stage and the Inquiry itself must be opened up much more widely than those who attended. Much work remains to be done but this was a good step forward.

Passing bus

Selfies aren’t as easy as they look when you are trying to focus on the upcoming meeting.

 

A visual for those who missed the Youth Go Karting Day

The Youth Go Karting Day was a huge success and was not short on fun or competitiveness.

See it to believe it!

Remembering on World AIDS Day

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This World AIDS Day, Haemophilia Scotland is remembering those we have lost to the virus and thinking of their families and friends.  We are also thinking of our members who fight the virus on a daily basis.  Our long term survivors and their loved ones are living with the consequences of the contaminated blood disaster.

World AIDS Day is an international day to remember those who have died because of AIDS, to prevent new cases of HIV and to stand in solidarity with people living with the virus.

This year, charity partners and NHS partners are challenging us with the question of “What will you do?

  • What will you do to remember those who have died because of AIDS?
  • What will you do to prevent new cases of HIV?
  • What will you do to challenge stigma and prejudice?

One of the ways that we remember those who have died because of AIDS is through the Contaminated Blood Memorial Fund. The Fund is bringing bereaved families together to plan, and raise money for, a lasting memorial to those who have died as a result of the contaminated blood disaster in Scotland.

To contribute to the Memorial Fund, you can:

  • Donate online at www.justgiving.com/contaminatedbloodmemorialfund.
  • Text CBME23 to 70070. The standard donation is £10 but you can give less or more by adding an amount to your text. For example, to give £20, you text “CMBE23 £20” to 70070.

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.

 

Congratulations to Aileen Gibson on her retirement

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We want to wish Aileen Gibson a happy retirement today!

Aileen is a Haemophilia Specialist Nurse at the New Royal Hospital for Sick Children in Glasgow.

In December 2016, Aileen received the “Best Haemophilia Nurse Award” from the Haemophilia Society. She has had a pivotal role in helping countless families come to terms with a diagnosis and has guided them through all the challenges, bumps, scares, and scraps that young families with a bleeding disorder experience.  Aileen’s respect and admiration is widespread across Scotland:

“You have been a huge part of our lives for the last 10 years and I’m glad we had you as our nurse!!”

“Thank you for being the best nurse and you will be missed lots!”

“Wishing you an amazing retirement…Thanks for being our haemo guru. Really is a sad day for us mammies but a delightful one for you.”

“You have meant so much to so many families and will be fondly remembered in the community for decades to come.”

We thank you for your dedication and service, Aileen, and wish you all the very best for the future!

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