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alstrom syndrome – support & information toggle navigation home about what is alström syndrome? genetics our vision our work within rare diseases meet the team our awards our annual reports our policies information standards history our services family support & useful resources growing up breaking down barriers let’s get moving as clinics medical information medical handbook nhs clinics surgery annual review treatment research research highlights rare disease research 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 click here to see our research highlights 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 a huge thank you to children in need! a huge thank you to children in need! asuk are committed to improving services for our young people and their families. in 2015, we were lucky enough to receive 3 years funding from children in need to provide support to young people to support them through transition from clinics at birmingham children’s hospital to the thank you wickersley cricket club! alström syndrome uk would like to extend our thanks to wickersley cricket club! yet again members of the club have very kindly donated £1,916.66 to alström syndrome uk following a successful fundraising event. 17 year old kion (pictured left), who is affected by alström syndrome accepted the donation earlier this month. we are all very save the date! the countdown is on for the asuk family fun and information day on saturday 13th october 2018. please save the date and watch this space for updates on the location, agenda and how to book! asuk big activity challenge what is the big activity challenge? asuk are now offering adults (18’s and over) with alström syndrome, the chance to try a new activity. you can apply for between £50-£500 to pay for the activity, all we ask you do is provide some photographs and write an article for publication in the asuk newsletter (within a quiz show star! a quiz show star! well done ellie on your superb performance on the bbc show hardball! click here to view the show in full! direct payments looking for more choice & control over how your care & support is arranged? then you need to opt for direct payments. direct payments give you more flexibility over how your care and support is arranged and provided. if, after a care needs assessment, your council decides you need support, you will receive a personal budget. you asuk big activity challenge what is the big activity challenge? asuk are now offering adults (18’s and over) with alström syndrome, the chance to try a new activity. you can apply for between £50-£500 to pay for the activity, all we ask you do is provide some photographs and write an article for publication in the asuk newsletter (within rare disease uk, new project for young people rare 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 breaking down barriers website launched breaking 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/ a huge thank you to children in need! a huge thank you to children in need! asuk are committed to improving services for our young people and their families. in 2015, we were lucky enough to receive 3 years funding from children in need to provide support to young people to support them through transition from clinics at birmingham children’s hospital to the wow! – listen to inspirational kion on bbc radio 2 listen to inspirational kion (pictured below) who featured on bbc radio 2’s chris evans morning show, on monday 13th november 2017. follow the link below to the recording, if you move the iplayer to 2 hours 1 min you can hear from kion speaking about having alstrom syndrome and the work of alstrom syndrome uk to promote send inquiry – have your say! send – a new inquiry the government education committee has launched an inquiry into support for children and young people with special educational needs and disabilities (send). what is the send system? in 2014, the government introduced changes to the send system, with the intention of offering simpler, improved and consistent help for children and fundraising for asuk! a huge thank you to david lunt who will be taking part in the london marathon on 22nd april to help raise funds for a number of charities one of which is alström syndrome uk! we will let you know later this month how he gets on! good luck david! please visit our donation page send inquiry – have your say! send – a new inquiry the government education committee has launched an inquiry into support for children and young people with special educational needs and disabilities (send). what is the send system? in 2014, the government introduced changes to the send system, with the intention of offering simpler, improved and consistent help for children and easy fundraising – whilst you shop! did you know that you can support alström syndrome uk by shopping online? every time you shop online via easyfundraising at one of the 3,300 retailers including john lewis, aviva, sainsbury’s and booking.com, a donation will be made to alström syndrome uk, and it won’t cost you a penny extra. it’s really simple to get wow! – listen to inspirational kion on bbc radio 2 listen to inspirational kion (pictured below) who featured on bbc radio 2’s chris evans morning show, on monday 13th november 2017. follow the link below to the recording, if you move the iplayer to

URL analysis for alstrom.org.uk

http://www.alstrom.org.uk/thank-you-wickersley-cricket-club/
http://www.alstrom.org.uk/surgery/
http://www.alstrom.org.uk/fundraising/
http://www.alstrom.org.uk/medical-information/
http://www.alstrom.org.uk/having-fun/
http://www.alstrom.org.uk/cin/
http://www.alstrom.org.uk/breaking-down-barriers
http://www.alstrom.org.uk/asuk-big-activity-challenge/
http://www.alstrom.org.uk/research-highlights/
http://www.alstrom.org.uk/ciliopathy/
http://www.alstrom.org.uk/breaking-down-barriers-website-launched/
http://www.alstrom.org.uk/privacypolicy
http://www.alstrom.org.uk/research-papers/
http://www.alstrom.org.uk/our-polices/
http://www.alstrom.org.uk/treatment/

Whois Information

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Error for "alstrom.org.uk".

the WHOIS query quota for 2600:3c03:0000:0000:f03c:91ff:feae:779d has been exceeded
and will be replenished in 98 seconds

WHOIS lookup made at 20:30:49 08-Aug-2017

--
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:

Copyright Nominet UK 1996 - 2017.

You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
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repackaging, recompilation, redistribution or reuse (B) obscuring, removing
or hiding any or all of this notice and (C) exceeding query rate or volume
limits. The data is provided on an 'as-is' basis and may lag behind the
register. Access may be withdrawn or restricted at any time.

  REFERRER http://www.nominet.org.uk

  REGISTRAR Nominet UK

SERVERS

  SERVER uk.whois-servers.net

  ARGS alstrom.org.uk

  PORT 43

  TYPE domain

DISCLAIMER
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:
Copyright Nominet UK 1996 - 2017.
You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
which includes restrictions on: (A) use of the data for advertising, or its
repackaging, recompilation, redistribution or reuse (B) obscuring, removing
or hiding any or all of this notice and (C) exceeding query rate or volume
limits. The data is provided on an 'as-is' basis and may lag behind the
register. Access may be withdrawn or restricted at any time.

  REGISTERED no

DOMAIN

  NAME alstrom.org.uk

NSERVER

  NS28.UKHOST4U.COM 188.64.184.198

  NS16.UKHOST4U.COM 188.64.184.198

  NS27.UKHOST4U.COM 188.64.184.197

  NS15.UKHOST4U.COM 188.64.184.197

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