dfsg.org.uk Report : Visit Site


  • Ranking Alexa Global: # 10,369,433

    Server:LiteSpeed...

    The main IP address: 77.72.0.110,Your server United Kingdom,Torquay ISP:Krystal Solutions LLP  TLD:uk CountryCode:GB

    The description :the duchenne family support group (dfsg) exists to provide support for families with children diagnosed as having duchenne muscular dystrophy (dmd). the dfsg is a national charity run by families for ...

    This report updates in 05-Dec-2018

Created Date:2000-02-07
Changed Date:2016-02-07

Technical data of the dfsg.org.uk


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Latitude: 50.463840484619
Longitude: -3.5143399238586
Country: United Kingdom (GB)
City: Torquay
Region: England
ISP: Krystal Solutions LLP

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DNS

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HtmlToText

dfsg family helpline number: 0800 121 4518 free from mobiles & landlines home about dfsg understand dmd news events contact dfsg search discover how you can do something amazing today: i want to help > do something great today make a donation virgin london marathon run the marathon for us! your donations matter how we spend your money about news and blog contact i would like to donate resources and links understand dmd thoughts from the development officer about give as you live read current news here... news archive - look up past news items dfsg on twitter follow us @duchennefsg tweets by @duchennefsg dfsg workshops and conferences using 'give as you live' is a really easy way to help us raise funds for dfsg. use the link to go shopping and help support dfsg. some retailers give up to 3% commission and in december 2015 dfsg made £150 from 'give as you live'. the duchenne family support group (dfsg) exists to provide support for families with children diagnosed as having duchenne muscular dystrophy (dmd). the dfsg is a national charity run by families for families affected by dmd. it provides a positive national support network of parents, their families and professionals. the dfsg helps bring families together for mutual support, sharing of information and experience, and social activities and has been doing so since 1987. fundraise for duchenne family support group when you shop online the london marathon the 2018 virgin money london marathon took place on 22nd april 2018. a healthy sum was raised through the efforts of our runners for which we say a heartfelt 'thank you' although our numbers were depleted due to injury. we are looking to 2019 when the marathon is scheduled for sunday 28th april 2019. there are seven places for runners available, please contact dfsg if you are interested in participating thank you - an announcement on the early access to medicines scheme for raxone we are delighted to announce that the mhra have decided to maintain a positive opinion on the early access to medicines scheme for raxone to treat people living with duchenne muscular dystrophy. this means that raxone remains on course to have its eams award renewed, so that patients over 10 years of age, showing a decline in respiratory function and who are currently not taking glucocorticoids, can continue to access raxone until june 2019 this was a joint effort from the entire duchenne community and action duchenne, dmd pathfinders, duchenne family support group, duchenne uk and muscular dystrophy uk cannot thank enough, all of you who provided vital feedback to this process. each and every organisation appreciates how much effort and courage goes into providing this testimony, whether it is delivered in writing or in person, and we have no doubt this had a positive impact on the committee’s decision. the uk commission on human medicines (chm) determined from the evidence and testimony received, that the risk/benefit profile was acceptable and there is a clear high unmet medical need for patients with duchenne. receiving feedback from such a wide spectrum of the community was integral to this. "dfsg is delighted with the positive news that the eams scheme for raxone is being renewed based on scientific opinion of the risk/benefit ratio. the mhra involved action duchenne and all the uk patient organisations in this process. as a collective powerful uk community, we supported young people, adults living with duchenne and caregivers both in collecting vital lived experience testimonies on respiratory health and in person,” said dfsg development officer phillippa farrant “raxone is available for those who are eligible and after appropriate medical consultation the early access to medicines scheme (eams) for raxone the aim of the eams is to provide earlier availability of promising medicines to patients in the uk where there is high unmet clinical need. it is to slow the decline of respiratory function in patients with duchenne from the age of 10 years who are currently not taking glucocorticoids. at the same time more data is able to be captured, to evaluate the effectiveness of the medicine. treatment will only be provided in specialist centres that are experienced in managing duchenne and there is the requirement for careful monitoring to ensure the safety of patients during the eams. people with duchenne may discuss together with their doctor whether they are suitable for this treatment. this frequently asked questions document provides more detail, but if you have any questions please do not hesitate to contact us. recent news, articles and conferences adult duchenne guidelines consultation period open friday 27th october 2017 muscular dystrophy uk brought together adults living with duchenne muscular dystrophy, health professionals, partner charities and pharmaceutical representatives to discuss new best-practice care recommendations being created for health professionals supporting an adult with duchenne in the uk. prudential ridelondon 2017 developed by the mayor of london and his agencies in 2013, prudential ridelondon is a world-class festival of cycling. the fifth edition took place over the weekend of 28-30 july 2017. the event features the prudential ridelondon-surrey 100 – a 100-mile challenge which three cyclists rode in support of dfsg new information to help families from muscular dystrophy uk muscular dystrophy uk has launched the second edition adaptations manual: for children and adults living with muscle-wasting conditions. families regularly approach muscular dystrophy uk with questions about the best adaptations to get for themselves and for family members. the second edition of the adaptations manual aims to answer those questions. ten posts in place to support uk clinical trial capacity in december 2015, eight patient organisations, who are working to help support clinical trial development for duchenne muscular dystrophy, announced a total of £1.2million of investment, to fund a total of 16 clinical posts. today we are announcing that ten of those sixteen posts have now been recruited. the posts are at great ormond street hospital nhs foundation trust in london (gosh), the john walton muscular dystrophy research centre at newcastle university, university hospitals bristol nhs foundation trust and alder hey children’s hospital in liverpool. the newcastle plan charities announce £1.2million investment in key clinical posts at leading neuromuscular centres for duchenne muscular dystrophy. eight patient organisations, who are working to eradicate duchenne muscular dystrophy, are funding a total of 16 clinical posts at great ormond street hospital in london, the john walton muscular dystrophy research centre at newcastle university and alder hey children’s hospital in liverpool, to help support clinical trial development for duchenne muscular dystrophy. the dfsg are pleased to be involved with this project and although not supporting financially as this is not in our remit, we are working closely with all of the charities in a n advisory capacity . skip-nmd reports progress on skipping exon 53 encouraging results on the successful completion of the first part of a clinical trial to skip exon 53 in boys with duchenne muscular dystrophy have been reported at the skip-nmd consortium meeting that took place in sardinia from the 24-25 june 2015. full report published here... download the pdf demos seeking evidence about young people with complex disabilities, life-limiting and life-threatening illnesses demos, an independent think-tank (research charity) based in london, are looking at what support is available across the uk for children and young people with complex disabilities, life-limiting and life-threatening illnesses, and their families. they are collecting evidence and are asking for families affected to complete some surveys. nice has recommended funding on the nhs in england for translarna. nice has recommended funding on the nhs in eng

URL analysis for dfsg.org.uk


https://www.dfsg.org.uk/contact-dfsg/
https://www.dfsg.org.uk/about-dfsg/
https://www.dfsg.org.uk/about-dfsg/how-we-spend-your-money/
https://www.dfsg.org.uk/about-give-you-live/
https://www.dfsg.org.uk/about-dfsg/legal-docs/
https://www.dfsg.org.uk/thoughts-and-news-chair/
https://www.dfsg.org.uk/news/skip-nmd-reports-progress-skipping-exon-53/
https://www.dfsg.org.uk/news/skip-nmd-research-project/
https://www.dfsg.org.uk/news/petition-translarna-prescribing-presented-david-cameron/
https://www.dfsg.org.uk/news/news-archive/
https://www.dfsg.org.uk/news/skip-nmd-reports-progress-skipping-exon-53/
https://www.dfsg.org.uk/news/ten-posts-place-support-uk-clinical-trial-capacity/
https://www.dfsg.org.uk/news/skip-nmd-new-duchenne-clinical-trial-starting/
https://www.dfsg.org.uk/index.php?cid=409
https://www.dfsg.org.uk/news/
dfsg.org.uk
willowfoundation.org.uk

Whois Information


Whois is a protocol that is access to registering information. You can reach when the website was registered, when it will be expire, what is contact details of the site with the following informations. In a nutshell, it includes these informations;


Domain name:
dfsg.org.uk

Registrant:
Duchenne Family Support Group

Registrant type:
UK Registered Charity, (Charity number: 328220)

Registrant's address:
37A Highbury New Park
Islington
London
London
N5 2EN
United Kingdom

Data validation:
Nominet was able to match the registrant's name and address against a 3rd party data source on 10-Dec-2012

Registered through:
Commotion Creative Ltd
URL: http://www.commotion.co

Registrar:
Heart Internet Ltd t/a Heart Internet [Tag = HEARTINTERNET]
URL: http://www.heartinternet.co.uk

Relevant dates:
Registered on: 07-Feb-2000
Expiry date: 07-Feb-2018
Last updated: 07-Feb-2016

Registration status:
Registered until expiry date.

Name servers:
ns.mainnameserver.com
ns2.mainnameserver.com

WHOIS lookup made at 06:56:56 12-Nov-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 dfsg.org.uk

  PORT 43

  TYPE domain

OWNER

  ORGANIZATION Duchenne Family Support Group

TYPE
UK Registered Charity, (Charity number: 328220)

ADDRESS
37A Highbury New Park
Islington
London
London
N5 2EN
United Kingdom
Data validation:
Nominet was able to match the registrant's name and address against a 3rd party data source on 10-Dec-2012
Registered through:
Commotion Creative Ltd
URL: http://www.commotion.co

DOMAIN

  SPONSOR Heart Internet Ltd t/a Heart Internet [Tag = HEARTINTERNET]

  CREATED 2000-02-07

  CHANGED 2016-02-07

STATUS
Registered until expiry date.

NSERVER

  NS.MAINNAMESERVER.COM 79.170.40.2

  NS2.MAINNAMESERVER.COM 79.170.43.3

  NAME dfsg.org.uk

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 yes

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