Alström Syndrome UK
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Alström Syndrome UK supports children, adults and families affected by Alström Syndrome.
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Fantastic Ball, Raising Vital Funds and Networking with Stars! On the 30th November, Kerry was invited to attend the Sparks Winter Ball. The purpose of the event was to highlight the work of Sparks, to thank the people who have contributed funding towards the development of paediatric research and to raise funds to enable them to continue this vital work. The evening raised over £300,000 and it was hosted by an array of sporting stars, including Sir Matthew Pinsent (pictured). ASUK continue to collaborate with organisations like Sparks to ensure we are aware of new developments in research and we are always seeking new opportunities to further develop our knowledge and understanding. You can find further information about their work via their website http://www.sparks.org.uk/ Sparks Charity
Marvellous Superstar Christmas Party!
New post (Marvellous Superstar Christmas Party!) has been published on Alstrom Syndrome UK
Invitation to Christmas Party!
New post (Invitation to Christmas Party!) has been published on Alstrom Syndrome UK
Are you getting enough Vitamin D?
New post (Are you getting enough Vitamin D?) has been published on Alstrom Syndrome UK
BBC - Home - Children in Need
Don't forget to watch the Children in Need show tonight at 7:30pm on BBC1. Children in Need is helping charities like ASUK make a huge difference to children, young people and their families across the UK. http://www.bbc.co.uk/corporate2/childreninneed
Rare Disease: Taking a Different Approach
The World Orphan Drug Congress is taking place currently from the 15th - 17th November 2016 in Brussels. Providing a platform for strategy, advocacy and partnering for the orphan drug industry. Find out more via the Orphan Drugs website. http://www.orphan-drugs.org/
'Think Research' Patient Day
New post ('Think Research' Patient Day) has been published on Alstrom Syndrome UK
First Clinical Trial for AS in the UK!
New post (First Clinical Trial for AS in the UK!) has been published on Alstrom Syndrome UK
If You Only Pneu on World Pneumonia Day
12th November is World Pneumonia Day Stop Pneumonia. Pneumonia is responsible for 1 in 6 deaths in children under 5 years old worldwide! Go to their website or watch this clip to find out more. Our AS specialists at QEH and BCH advise getting the pneumonia vaccination every 5 years if you have a complex condition such as Alstrom Syndrome. You can also find vaccination information on our website http://www.alstrom.org.uk/news/nhs-stay-well-this-winter-dont-put-off-your-vaccinations http://stoppneumonia.org/ https://youtu.be/4ZaE1Ak510w
DIY SOS, Series 27: 5. DIY SOS at Great Ormond Street Hospital
Very emotional and heart warming DIY SOS this week, featuring many children with rare and complex conditions. Great work! http://www.bbc.co.uk/iplayer/episode/b082m5fy/diy-sos-series-27-5-diy-sos-at-great-ormond-street-hospital
Genetic Alliances' New Project, Get Involved Today!
New post (Genetic Alliances' New Project, Get Involved Today!) has been published on Alstrom Syndrome UK
Fundraising Hub
Support BBC Children in Need #CiN this year and support charities like ASUK, who they have funded to support children and young people with this ultra rare condition. Go to their website to find lots of fundraising ideas and more about 'Get your Ears on!' and don't forget to watch the appeal show on the 18th November 2016. https://www.bbcchildreninneed.co.uk/fundraisinghub
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