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!
Sir Brian Langstaff, Chair of the Infected Blood Inquiry, is writing a letter to everyone affected by the contaminated blood and blood products disaster. In Scotland, the letter is being sent out by the Scottish Infected Blood Support Scheme.
READ THE LETTER FROM SIR BRIAN LANGSTAFF
Haemophilia Scotland has agreed to help get the letter out to those affected who are not eligible for financial support but were still affected. We know there are people who don’t have enough surviving medical records to get support from the current schemes; often referred to as the Stage Zeros. We also think there will be bereaved families who aren’t registered. We would be very grateful if everyone reading this post could pass on a copy of the letter to anyone they think might be otherwise be missed.
The covering letter from the Inquiry team says,
In February 2018 Sir Brian Langstaff, a highly experienced High Court judge, was appointed to Chair the Inquiry and a team is being established to support this important work. Sir Brian will be the full-time Chair of the Inquiry from 1 May following his retirement from the High Court. However, in order that people affected by this tragedy face no further undue delay, he will use the
intervening period to conduct a further consultation on the Inquiry’s terms of
reference. We are very grateful to people who have already provided contributions and would encourage others to do so.
Sir Brian has written an introductory letter to all victims of this tragedy. This
letter, a copy of which is attached, sets out his determination to put people at
the heart of the Inquiry and contains details of the consultation on the terms of
reference. Further details on the consultation can be found at www.infectedbloodinquiry.org.uk. Copies of the key consultation documents
are also attached for those who may have problems accessing the internet.
We have asked the scheme you are registered with to send this letter to you.
Your details have not been shared with us. If you would like to receive further
information on the Inquiry please do consult the website or feel free to contact
us at firstname.lastname@example.org or on our freephone number 0808
Infected Blood Inquiry Team
Haemophilia Scotland, the SIBF, and independent campaigners in Scotland are working together to develop a response to the Inquiry’s Terms of Reference Consultation. This will be discussed at a members’ campaigns meeting at the Apex Haymarket in Edinburgh on the 21st of April. A small group will then meet with Sir Brian Langstaff and his team to put forward our views.
Meanwhile, if you have any points that you’d like to be included in the Scottish response to the consultation please email email@example.com and/or firstname.lastname@example.org.
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,
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.
The statutory Public Inquiry into infected blood and blood products, under Sir Brian Langstaff, has just launched it’s website at www.infectedbloodinquiry.org.uk
The site gives some high level details about the Inquiry and a little more information about Sir Brian Langstaff. However, the main content at the moment is a consultation on the Terms of Reference for the Inquiry. The consultation was launched at the end of yesterday and runs until 26 April.
On the Inquiry website you will find,
Haemophilia Scotland will be working with independent campaigners in Scotland and the Scottish Infected Blood Forum (SIBF) to make a consultation response highlighting the Scottish dimensions to the consultation questions. As well as using the Scottish Position Paper we published in October, we will be holding a joint members meeting so that everyone in Scotland can discuss the issues raised by the Inquiry consultation together. We will publicise the details of that meeting as soon as it is confirmed.
HOME DELIVERY UPDATE
As the red weather warning has been extended, LloydsParmacy Clinical Homecare have had to make the decision to have no distribution in Scotland today. They will continue to monitor the situation and hope to resume service tomorrow (Friday) and also into Saturday. They are very grateful for everyone’s patience. They will contact you directly if your delivery will be affected.
The Haemophilia Scotland office is closed today but staff will be working from home. If you’d like to get in touch please use email if you can. As usual, all medical enquiries should be directed to your Haemophilia Centre.
We are all extremely grateful to the dedicated staff of the Haemophilia Centres, many of whom have battled into work today. We’ve heard some Center staff didn’t even get home last night, choosing instead to stay in local hotels to make sure their Centre was staffed today.
More information about the travel disruption, including advice on whether and how to travel can be found on the Traffic Scotland website.
The Haemophilia Scotland team showing their support for Rare Disease Day 2018
A rare disease is any condition which affects less than 0.1% of the population – that is 5 or fewer people in every 10,000 people. All the bleeding disorders which affect our members are rare conditions.
There are thousands of recognized rare diseases, with more being identified every year. Research shows that 1 in 17 people will suffer from a rare disease at some point in their life.
Haemophilia Scotland works with individuals and families with a wide range of bleeding disorders. Although there are around 2,500 people in Scotland with a diagnosed bleeding disorder, there are an estimated 300,000 people with one of the 6,000 to 8,000 recognised rare diseases. So, we may be small on our own but together we have a very loud voice indeed! “Looks like rare’s not so rare.”