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fibrous dysplasia support society registered charity:1175622 site last updated on 10/7/18 home news & newsletters what is fd? what is mas? what is cherubism? research medical guidelines medical disclaimer about us fundraising meetings/events useful information associated websites contact us important: the fibrous dysplasia support society (fdss) does not make any medical recommendations. its members are fd sufferers or carers who have no medical qualification, just their own anecdotal experiences and knowledge which is shared for support purposes. any information provided by fdss must therefore be treated as just information, not medical advice. no action should be taken as a result of any information provided or implied by fdss without first seeking qualified and thorough medical advice. click here for full medical information disclaimer. rare disease day, 28th february 2018 patients and families with rare bone diseases are invited to a meeting at the royal national orthopaedic hospital, stanmore, middlesex on wednesday 28th february 2018 to discover what research is happening at the rnoh and to meet others with similar conditions. more information about this meeting can be found on the rare disease day website and on this poster . fdss annual meeting, 18/19 november 2017 this highly successful meeting attracted participants from america, italy, spain, ireland, israel, wales, scotland and, of course, england. it was lovely to meet some of you over the weekend, and we hope you felt it was worthwhile. several presentations were delivered throughout the weekend, and 33 family/patient consultations were arranged with drs collins, boyce and stanton. the success of the meeting can be gauged by the large number of appreciative comments we have received, some of which are listed here . dr collins asked for the following message to be posted to all those who attended the meeting: dear fdssuk meeting attendees, jamie (watson) has passed on to me your gratitude for my attending your meeting. i would like to say that it was a privilege to share, what has to a large extent been my life's work, with such an amazing group of people. i think i speak for all the doctors when i say that we found you to be an amazing group of people – the strength, resilience, and love the patients, families, and loved ones have for each other was on clear display and nothing short of inspirational! it was an honour to be part of such an amazing and successful event. sincerely, michael collins aviva community funding 2017 thank you to everyone who voted for the aviva community funding project, but, unfortunately, we weren't successful as only the first 200 projects got automatic funding. we weren't quick enough off the mark as a group and our voters encountered difficulties when accessing aviva's website which kept crashing as people tried to vote for their community projects. aviva did, however, kindly give us £100 due to the voting difficulties. maybe next year! fdss agm, 8th october 2016, birmingham this presentation was given at the meeting by prof nick shaw on 'fibrous dysplasia in children'. call for action! doctors in oxford have been working with the fdss on the rudy study (rare uk bone, joint and blood vessel study). the aim of this study is to improve understanding of all aspects of rare bone diseases with the aim of developing new tests and treatments to improve patients' lives. they have now opened recruitment to all adults and children with fibrous dysplasia. they are particularly researching adults with and without pain from their bone cysts. if you are interested in finding out more including how to register please check the library on rudy's website www.rudystudy.org . the fibrous dysplasia support society now has a justgiving account. please click here to donate. the fibrous dysplasia support society (fdss) was formed in 2007 by a group of patients, and their carers, who are affected by fibrous dysplasia, mccune albright syndrome (mas) or cherubism. it exists to provide information and support by sharing our knowledge and experience of the condition with those who would like to know more. fdss has no direct medical involvement or funding. it is currently funded by donations. these donations are then used to provide resources, such as this website, and other activities such as meetings. the aims of fdss as stated in its constitution are: to encourage, promote and assist a better understanding of fibrous dysplasia (including its associated conditions) and its possible treatments among patients and their carers. to promote increased awareness of the condition amongst medical professionals. to actively encourage people with the condition to meet others affected and to share their experiences. top of page

URL analysis for fdssuk.org.uk

http://www.fdssuk.org.uk/events.html
http://www.fdssuk.org.uk/pdf/2016meeting,nickshawpresentation.pdf
http://www.fdssuk.org.uk/index.html
http://www.fdssuk.org.uk/pdf/medicalnformationdisclaimer.pdf
http://www.fdssuk.org.uk/pdf/testimonials.pdf
http://www.fdssuk.org.uk/guidelines.html
http://www.fdssuk.org.uk/cherubism.html
http://www.fdssuk.org.uk/information.html
http://www.fdssuk.org.uk/contacts.html
http://www.fdssuk.org.uk/fd.html
http://www.fdssuk.org.uk/newsletters.html
http://www.fdssuk.org.uk/research.html
http://www.fdssuk.org.uk/mas.html
http://www.fdssuk.org.uk/aboutus.html
http://www.fdssuk.org.uk/pdf/rarediseasedayposter.pdf

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Error for "fdssuk.org.uk".

the WHOIS query quota for 2600:3c03:0000:0000:f03c:91ff:feae:779d has been exceeded
and will be replenished in 223 seconds

WHOIS lookup made at 20:23:44 22-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,
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.

  REFERRER http://www.nominet.org.uk

  REGISTRAR Nominet UK

SERVERS

  SERVER uk.whois-servers.net

  ARGS fdssuk.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 fdssuk.org.uk

NSERVER

  NS2.PHASE8.NET 85.233.164.62

  NS1.PHASE8.NET 85.233.160.68

  NS0.PHASE8.NET 81.88.63.114

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