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alström syndrome uk advancing diagnosis, care, treatment and support for those living with alström syndrome in the uk
breaking down barriers
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watch our new animation here
fundraise
donate
sign up

we are moving!
breaking down barriers website launched
generation genome report launched
shades for sight campaign
rare disease uk, new project for young people
asuk conference, book today!
generation genome report launched
rare disease uk, new project for young people
eurordis: access to medicines for all
we are moving!
awareness animation is launched!
shades for sight campaign
asuk joins uk rare disease policy board – improving services for all!
prime minister writes to asuk!
generation genome report launched
shades for sight campaign
breaking down barriers website launched
rare disease uk, new project for young people
our visitors
useful links
contact us
social media
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alström syndrome uk offer:
alström syndrome uk has three key aims:
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as clinics http://#
medical information http://www.alstrom.org.uk/medical-information/
medical handbook http://www.alstrom.org.uk/medical-handbook/
nhs clinics http://www.alstrom.org.uk/nhs-clinics/
surgery http://www.alstrom.org.uk/surgery/
annual review http://www.alstrom.org.uk/annual-review/
treatment http://www.alstrom.org.uk/treatment/
research http://#
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alstrom europe http://www.alstrom.org.uk/alstrom-europe/#
ciliopathy http://www.alstrom.org.uk/ciliopathy/
research papers http://www.alstrom.org.uk/research-papers/
event dates http://www.alstrom.org.uk/events/month/
latest news http://www.alstrom.org.uk/category/latest-news/
asuk conference http://www.alstrom.org.uk/asuk-conference
our newsletters http://www.alstrom.org.uk/newsletters
alstrom inspiration http://www.alstrom.org.uk/alstrom-inspiration/
having fun http://www.alstrom.org.uk/having-fun/
get involved http://#
fundraising http://www.alstrom.org.uk/fundraising/
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be inspired http://www.alstrom.org.uk/be-inspired/
special recognition http://www.alstrom.org.uk/special-recognition/
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- http://www.alstrom.org.uk/fundraising/
fundraise http://www.alstrom.org.uk/fundraising/
- https://www.justgiving.com/alstromsyndromeuk
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- http://www.alstrom.org.uk/contact/
sign up http://www.alstrom.org.uk/contact/
read more http://www.alstrom.org.uk/breaking-down-barriers
- http://www.alstrom.org.uk/we-are-moving/
we are moving! http://www.alstrom.org.uk/we-are-moving/
- http://www.alstrom.org.uk/breaking-down-barriers-website-launched/
breaking down barriers website launched http://www.alstrom.org.uk/breaking-down-barriers-website-launched/
- http://www.alstrom.org.uk/generation-genome-report-launched/
generation genome report launched http://www.alstrom.org.uk/generation-genome-report-launched/
- http://www.alstrom.org.uk/shades-for-sight-campaign/
shades for sight campaign http://www.alstrom.org.uk/shades-for-sight-campaign/
- http://www.alstrom.org.uk/rare-disease-uk-new-project-for-young-people/
rare disease uk, new project for young people http://www.alstrom.org.uk/rare-disease-uk-new-project-for-young-people/
- http://www.alstrom.org.uk/asuk-conference-book-today/
asuk conference, book today! http://www.alstrom.org.uk/asuk-conference-book-today/
- http://www.alstrom.org.uk/generation-genome-report-launched/
generation genome report launched http://www.alstrom.org.uk/generation-genome-report-launched/
- http://www.alstrom.org.uk/rare-disease-uk-new-project-for-young-people/
rare disease uk, new project for young people http://www.alstrom.org.uk/rare-disease-uk-new-project-for-young-people/
- http://www.alstrom.org.uk/eurordis-access-to-medicines-for-all/
eurordis: access to medicines for all http://www.alstrom.org.uk/eurordis-access-to-medicines-for-all/
- http://www.alstrom.org.uk/we-are-moving/
we are moving! http://www.alstrom.org.uk/we-are-moving/
- http://www.alstrom.org.uk/awareness-animation-is-launched/
awareness animation is launched! http://www.alstrom.org.uk/awareness-animation-is-launched/
- http://www.alstrom.org.uk/shades-for-sight-campaign/
shades for sight campaign http://www.alstrom.org.uk/shades-for-sight-campaign/
- http://www.alstrom.org.uk/asuk-joins-uk-rare-disease-policy-board-improving-services-for-all/
asuk joins uk rare disease policy board – improving services for all! http://www.alstrom.org.uk/asuk-joins-uk-rare-disease-policy-board-improving-services-for-all/
- http://www.alstrom.org.uk/prime-minister-writes-to-asuk/
prime minister writes to asuk! http://www.alstrom.org.uk/prime-minister-writes-to-asuk/
- http://www.alstrom.org.uk/generation-genome-report-launched/
generation genome report launched http://www.alstrom.org.uk/generation-genome-report-launched/
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breaking down barriers website launched http://www.alstrom.org.uk/breaking-down-barriers-website-launched/
- http://www.alstrom.org.uk/rare-disease-uk-new-project-for-young-people/
rare disease uk, new project for young people http://www.alstrom.org.uk/rare-disease-uk-new-project-for-young-people/
privacy policy http://www.alstrom.org.uk/privacypolicy
accessibility http://www.alstrom.org.uk/accessibility
disclaimer http://www.alstrom.org.uk/disclaimer
trustee area http://www.alstrom.org.uk/trustee-area/
tweets by asuk https://twitter.com/as_uk
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https://www.linkedin.com/company/alstrom-syndrome-uk
https://www.youtube.com/user/alstromsyndromeuk
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toggle navigation home about what is alström syndrome? genetics our vision meet the team our awards our annual reports our policies information standards history our services family support growing up breaking down barriers let’s get moving as clinics medical information medical handbook nhs clinics surgery annual review treatment research research highlights alstrom europe ciliopathy research papers news & events event dates latest news asuk conference our newsletters alstrom inspiration having fun get involved fundraising make a donation be inspired special recognition contact help make a difference to people living with alström syndrome subscribe to the alstrom syndrome youtube channel connect to alstrom syndrome on facebook call for papers open asuk conference 2017 join the alstrom syndrome community on rare connect alström syndrome uk advancing diagnosis, care, treatment and support for those living with alström syndrome in the uk watch our new animation here alström syndrome uk offer: support for families and individuals affected caring and supportive community promotion of innovative research medical screening clinics where patients can receive the most up to date treatments to manage their condition alström syndrome medical handbook family and professional conference opportunities to have fun and be part of our exciting projects! it is important to remember, as symptoms may develop at different stages and not everyone is affected by all of the symptoms. even amongst siblings the symptoms can vary. alström syndrome uk has three key aims: to support people who are affected by alström syndrome including their carers and the professionals who are working with them to raise awareness amongst both the public and medical professions of alström syndrome to raise funds to promote research into alström syndrome fundraise be inspired fundraise donate make a difference donate sign up for our latest news sign up emergency numbers the queen elizabeth hospital, birmingham and birmingham children’s hospital offers as multi-disciplinary clinics and as specialists. in an emergency your first point of contact should always be to call 999. if you need to speak to a medical expert in alström syndrome please contact asuk and we will put you in touch with the correct specialist. if you would like to speak to the as clinical lead please contact either: dr tarek hiwot (adult services), queen elizabeth hospital, birmingham: 07979 127826 or alternatively via the qeh switchboard: 0121 627 2000 prof tim barrett (children’s services), birmingham children’s hospital: 0121 333 9999 breaking down barriers read more asuk news we are moving!from the 24th july 2017 the charities registered office address will change to: 4 st kitts close torquay devon tq2 7gd during this time the current office telephone number 01803 613117 will not work so please dial 01709 210151 for all enquiries. if your enquiry is urgent please call 07970 071675breaking down barriers website launchedbreaking down barriers, website has launched! developing supportive and inclusive services for individuals and families affected by genetic conditions. have a look at the new website to find out more about this project and the fantastic work being achieved. http://breaking-down-barriers.org.uk/generation genome report launchedchief medical officer, professor dame sally davies’s has finalised an independent report to the government as she looks at the role of genomics. in particular how genomics may have the potential to improve health and prevent ill-health. the report discusses the current genomic provision in the nhs and looks in greater detail at the screeningshades for sight campaignthe 27th june 2017 marks national sunglasses day to highlight the importance of wearing sunglasses; rnib asked everyone to support the campaign ‘shades for sight’ by posting a selfie of themselves in their sunglasses. sunglasses protect your eyes, so remember to wear them 😎 team at asuk, even our furry friends are getting in on therare disease uk, new project for young peoplerare disease uk are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “this project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. these activities will take place at events coordinatedasuk conference, book today!‘health, happiness and wellbeing conference’ we warmly invite you to our ‘health, happiness and wellbeing’ conference taking place on the 6th and 7th october 2017 at the aston conference centre in birmingham. the conference will begin with a research and scientific symposium from 1:30 pm on friday 6th october and will conclude after an evening generation genome report launchedchief medical officer, professor dame sally davies’s has finalised an independent report to the government as she looks at the role of genomics. in particular how genomics may have the potential to improve health and prevent ill-health. the report discusses the current genomic provision in the nhs and looks in greater detail at the screeningrare disease uk, new project for young peoplerare disease uk are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “this project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. these activities will take place at events coordinatedeurordis: access to medicines for alleurordis has published their position on early access to medicines in europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments needed. currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. a compassionatewe are moving!from the 24th july 2017 the charities registered office address will change to: 4 st kitts close torquay devon tq2 7gd during this time the current office telephone number 01803 613117 will not work so please dial 01709 210151 for all enquiries. if your enquiry is urgent please call 07970 071675awareness animation is launched!asuk is very excited to launch our alström syndrome ‘living with a rare disease’ animation to raise awareness and understanding about this rare disease. let’s all raise awareness and share this animation with friends, family, relevant organisations and professionals to spread the word about this ultra rare condition. click on the image below to watchshades for sight campaignthe 27th june 2017 marks national sunglasses day to highlight the importance of wearing sunglasses; rnib asked everyone to support the campaign ‘shades for sight’ by posting a selfie of themselves in their sunglasses. sunglasses protect your eyes, so remember to wear them 😎 team at asuk, even our furry friends are getting in on the asuk joins uk rare disease policy board – improving services for all!asuk is delighted to announce we are now on the uk rare disease policy board! asuk is involved to strive for improved services for all affected by rare conditions in the uk, ensuring everyones voice is heard.  the all party parliamentary group (appg) on rare, genetic and undiagnosed conditions published a report calling on the departmentprime minister writes to asuk!many of you will be aware that we have raised some concerns, alongside other charities about the likelihood of restricting nhs treatments for people with alström syndrome and other rare complex diseases. alongside about 30 other health charities from the specialised healthcare alliance, we voiced our concerns and signed a letter addressed to the primegeneration genome report launchedchief medical officer, professor dame sally davies’s has finalised an independent report to the government as she looks at the role of genomics. in particular how genomics may have the potential to improve health and prevent ill-health. the report discusses the current genomic provision in the nhs and looks in greater detail at the screeningshades for sight campaignthe 27th june 2017 marks national sunglasses day to highlight the importance of wearing sunglasses; rnib asked everyone to support the campaign ‘shades for sight’ by posting a selfie of themselves in their sunglasses. sunglasses protect your eyes, so remember to wear them 😎 team at asuk, even our furry friends are getting in on thebreaking down barriers website launchedbreaking down barriers, website has launched! developing supportive and inclusive services for individuals and families affected by genetic conditions. have a look at the new website to find out more about this project and the fantastic work being achieved. http://breaking-down-barriers.org.uk/rare disease uk, new project for young peoplerare disease uk are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “this project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. these activities will take place at events coordinated our visitors useful linksprivacy policy accessibility disclaimer trustee area contact us 4 st kitts close, torquay, devon tq2 7gd 07970 071675 / 01709 210151 info@alstrom.org.uk charity no: 1071196 company no: 3557191 social media tweets by asuk designed by ambinet © 2017. all rights reserved.


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