A Bleeding Disorders priority setting partnership (PSP) has been formed in conjunction with The James Lind Alliance and they are asking for your help.
The PSP is compiling a list of the 10 most important unanswered questions about bleeding disorders. Once finished, the list will be used to promote research and attract funding. It’s is very important that research goes into areas which have an impact on the lives of individuals and families with inherited bleeding disorders. That is why the PSP want to encourage those who live with the conditions to feed in their ideas and propose research questions.
All you need to do to take part is complete a short online survey.
The JLA is a non-profit making initiative which is a branch of the National Institute for Health Research (NIHR). The experience of the JLA with conducting PSPs is helping us shape and organise this project. You can find details about the JLA and other PSPs here.
Haemophilia Scotland is not a member of the PSP Steering Group but we are supportive of their objectives.
In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network. We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.
There report highlighted that there is unmet demand for physiotherapy and psychosocial services. The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,
- Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
- Over half of people have additional social, emotional, or practical support needs.
- People are experiencing stigma and discrimination at work.
- While it is understood that activity is important, activity levels are low.
- People wanted more local and specific support services.
The top three priorities for the future were,
- Reducing the number of bleeds
- Finding a cure
- Reducing the frequency of infusions
Read the Report
You can download a copy here or by signing up for a free account on Issuu.
We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.
Photos from the Scottish Parliament Reception
Photos courtesy of Elspeth Parsons of The Lines Between.
We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.
It’s just 29 days until Rare Diseases Day 2017! Rare Diseases Day is always on the last day of February, which this year is the 28th.
Here at Haemophilia Scotland we are great supporters of Rare Diseases Day. A disease is considered rare when it effects less than 1 in 2,000 people. That means even the most common bleeding disorders, such as Haemophilia A or B and von Willebrand’s Disease, are rare diseases. Many of the inherited bleeding disorders are ultra rare and effect very few people in Scotland.
Rare Diseases Day gives us all a chance to come together with people affected by other conditions to point out that 1 in 17 people has a rare disease or condition at some point in their life. So, when we you look at the big picture, having a rare disease isn’t that unusual at all.
One great way you can use Rare Diseases Day 2017 is to take part in the Rare Diseases UK Instagram 28 day photo challenge!
How to get involved
- Follow @rarediseaseuk on Instagram.
- Take a photo every day from 1-28 February based on the themes provided below. Alternatively you can just get involved on the days that suit you!
- Post your photo to Instagram, using the hashtag #RareDiseaseDay.
- Tag @rarediseaseuk in your post so we can re-post photos.
- Keep an eye on our Instagram, Facebook and Twitter pages to see what other people are posting.
If you can’t manage every day, feel free to participate on the days that most appeal to you. there will be prizes for the best photos and most committed participants so good luck!
Help get #RareDiseaseDay trending and start a conversation about rare diseases!
We are closing the needs assessment survey on Thursday morning (1st December). We’ve had a really good response so far but the more people who take part the more useful our results will be. We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.
There are some parts of Scotland that are a little under-represented at the moment. We are keen that the results reflect everyone in Scotland. So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.
If you do take part then you might also win one of three FitBits that we are giving away. They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!
Every year, at the end of February, Haemophilia Scotland joins other patient groups around the world to mark Rare Diseases Day.
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. So each condition maybe rare on its own but together rare diseases affect a lot of patients and deserve a higher profile.
Rare Diseases Day is the last day in February every year.
The Garden Lobby of the Scottish Parliament was packed for the 2015 Rare Diseases Day Scottish Parliament Reception.
Susan, Carolyn and Dan attended an excellent Rare Diseases Day Reception in the Scottish Parliament last night. The Garden Lobby was packed with MSPs, patients, carers, and healthcare professionals. Lots of patient organisations like ours were there and displaying posters about their work. The event was also well attended by representatives from both the Scottish Government and pharmaceutical companies who make products fro rare diseases.
A condition is classed are rare if less than 1 in every 2,000 people are effected. That means that all bleeding disorders are rare. There are up to 8,000 identified rare conditions with more being identified all the time. The Genetic Alliance estimates that there are 300,000 people with a rare condition in Scotland.
The Scottish Government has signed up to a single, UK-wide, Rare Diseases Strategy and has an implementation plan which sets out what that will mean in Scotland. There is also an oversight group to make sure that the plan leads to real changes on the ground.
Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport, told the event about her view of the need for patients to have good information and support. She also highlighted the importance of patient groups to the work of the Scottish Medicines Consortium.
Are you ready for Rare Diseases Day?
Just in case you needed a reminder of what it is all about a new video has been released.
If you are inspired to get involved then you can Raise & Join Hands for Rare Diseases Day. Everyone is been asked to upload photos of themselves raising and joining hands to symbolise people with all sorts of conditions from all over the work coming together to raise awareness of rare diseases.
If you can get to Edinburgh on the evening of the 24th Feb then there are still tickets left for the Rare Diseases Day Reception at the Scottish Parliament. The event is free and is in the prestigious Garden Lobby. However, you’ll have to hurray, the organisers are asking for everyone to register before the end of Feb 17th. As we write that is less than 24hrs!