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-- you are using an outdated browser. please upgrade your browser or activate google chrome frame to improve your experience. × cookies help us improve your chordoma uk online experience. if you accept their use, continue using our site. or, find out more about cookies. of £350,000 target -- £432,746.81 raised so far… 44% -- donate -- follow us on twitter -- toggle navigation £432,746.81 raised so far… home diagnosis & treatment donate tissue fundraising your story get involved fundraising your story events patron founder news links contact events visit a fundraising event or plan one of your own! get involved! help us raise money to fund more research into chordoma get involved! help us raise money to fund more research into chordoma events visit a fundraising event or plan one of your own! latest news visit a fundraising event or plan one of your own! get involved! help us raise money to fund more research into chordoma get involved! help us raise money to fund more research into chordoma get involved! help us raise money to fund more research into chordoma latest news the latest fundraising benefits and research get involved! help us raise money to fund more research into chordoma get involved! help us raise money to fund more research into chordoma what is chordoma? chordoma is a rare primary bone cancer, meaning that it arises in bone (rather than spreads to bone). the bones involved are those at the base of the skull, the vertebral bodies (back bones), and the bone of the sacrum and coccyx at the base of the spine. chordoma is thought to arise from a persistent embryonic tissue (notochordal cells), which normally disappears before birth, but can persist in some people. however, the majority of individuals with notochordal remnants do not develop chordoma. chordoma is part of a family of cancers called sarcoma, which include cancers of the bones, cartilage, muscles and other connective tissue. chordomas are generally slow growing, and tend to recur after treatment. why we are raising money for research? treatment options for chordoma are limited. initial diagnosis of chordoma is often difficult as its presenting symptoms can mimic more common musculoskeletal pain or other more common diseases. research has led to a definitive marker for chordoma, but now further research is needed to use these findings to discover how best to treat patients. there is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. without a focused approach to raising money for research into chordoma, little will change quickly. read more about what we want to achieve > who are we? the aim of chordoma uk is to raise awareness of chordoma within patient and clinician communities and to ensure the future of high-impact research initiatives in particular those led by professor adrienne flanagan, head of the research department of pathology at the ucl cancer institute, part of university college london, one of the world’s leading universities. -- susan fitz-gibbon founder and diagnosed with chordoma 2007 gerald fitz-gibbon founder richard sutton-mattocks trustee richard sutton-mattocks joins the board of chordoma uk having previously served over 7 years as chairman of the ucl cancer institute research trust, supporting cancer research at the ucl cancer institute. in that role he assisted with the development of chordoma uk and witnessed at first hand the research of professor adrienne flanagan into potential therapies with which to treat chordoma. inspired by that research and by the energy and determination of susan and gerald to improve outcomes for chordoma sufferers worldwide, richard was delighted to be invited to join the board of chordoma uk. a graduate of oxford university and a former partner of clifford chance llp, richard is also a member of the advisory board of the debbie fund, supporting research at the ucl cancer institute into therapies for cervical cancer. jerry del missier founder and executive chairman, copper street capital jerry is the founder and executive chairman of copper street capital llp, an independent investment firm. previously, he was a senior executive of barclays bank plc in london and new york for many years and also worked at bankers trust and bank of nova scotia in toronto. jerry is a past chairman of the board of the securities industry and financial markets association (sifma), and a member of the boards of the global financial markets association and the international swaps and derivatives association. he currently serves on the board of the metropolitan opera in new york and the maple leaf trust in london. a passionate believer in the transformative power of education, jerry also serves as a board member of room to read, a global education and literacy organization, the sutton trust and the advisory board of queen’s university smith school of business in kingston, canada. he is also a past member of the queen’s university board of trustees where he studied, earning a bsc (chemical engineering) and an mba. ed major trustee ed has built his professional career in the marketing world within professional services and technology companies. he has worked for large companies, including gartner and oracle, as well as start ups, such as orca social, that he also co-founded. he currently runs the commercial operations for the marketing vertical at globality, a silicon valley based technology company. he gained his undergraduate degree in business from the university of liverpool. ed and his family have been closely associated with chordoma uk since his father was diagnosed with the disease in 2008. tamana fayzan chordoma coordinator since graduating with a degree in biochemistry i have been fascinated by health and disease in the human body. although there are many advances in the treatment of cancer i am aware that for many patients there is still an uncertain future. this encouraged me originally to pursue a career in research and my first post involved an extensive project in embryology and stem cell transplantation. since then i felt that i could contribute more to research by engaging with patients and researchers – by bing ‘a link’ to ensure that patients understand about the research that is being undertaken and to facilitate researchers achieve their goals for patient benefit. i also have the opportunity to feed back to researchers the challenges that patients face (without saying i do this without breaking the confidentiality of patients) the post of chordoma co-ordinator immediately attracted me: it gives me the opportunity to facilitate research. i have the time to introduce patients to the idea of how they can contribute to research in order to improve clinical outcomes, and also make them aware of the community of patients who can help each other if this is what people want. i hope to assist professor flanagan proactively in developing academically excellent research, to raise awareness of chordoma research. play video watch our short video about chordoma uk × the aim of chordoma uk is to raise awareness of chordoma within patient and clinician communities and to ensure the future of high-impact research initiatives in particular those led by professor adrienne flanagan, head of the research department of pathology at the ucl cancer institute, part of university college london, one of the world’s leading universities. contact chordoma uk chordoma action now - together we can follow us on twitter chordoma uk is a registered charity (rcn 1173201) registered office c/o morrison & foerster (uk) llp. citypoint, one ropemaker st, london ec2y 9aw email us -- copyright chordoma uk | terms & conditions | privacy policy | site map | site by 3men²

URL analysis for chordoma-uk.org

http://www.chordoma-uk.org/diagnosis-and-treatment
http://www.chordoma-uk.org/terms-and-conditions
http://www.chordoma-uk.org/our-patron
http://www.chordoma-uk.org/#collapsethree
http://www.chordoma-uk.org/#collapseone
http://www.chordoma-uk.org/news
http://www.chordoma-uk.org/founder
http://www.chordoma-uk.org/privacy-policy
http://www.chordoma-uk.org/links
http://www.chordoma-uk.org/site-map
http://www.chordoma-uk.org/contact
http://www.chordoma-uk.org/stories
http://www.chordoma-uk.org/events
http://www.chordoma-uk.org/#collapsetwo
http://www.chordoma-uk.org/pages/donate_tissue
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Whois Information

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Domain Name: CHORDOMA-UK.ORG
Registry Domain ID: D167324216-LROR
Registrar WHOIS Server: whois.register.it
Registrar URL: http://we.register.it
Updated Date: 2017-07-18T23:31:18Z
Creation Date: 2012-12-11T12:20:13Z
Registry Expiry Date: 2018-12-11T12:20:13Z
Registrar Registration Expiration Date:
Registrar: Register.IT SPA
Registrar IANA ID: 168
Registrar Abuse Contact Email: [email protected]
Registrar Abuse Contact Phone: +39.5520021555
Reseller:
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Registry Registrant ID: C132253558-LROR
Registrant Name: Fitz-Gibbon Gerald
Registrant Organization: Gerald Fitz-Gibbon
Registrant Street: 19 St Peters Road
Registrant City: Twickenham
Registrant State/Province: Greater London
Registrant Postal Code: TW1 1QY
Registrant Country: GB
Registrant Phone: +44.2088928921
Registrant Phone Ext:
Registrant Fax:
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Registrant Email: [email protected]
Registry Admin ID: C132253559-LROR
Admin Name: Administrator Domain
Admin Organization: Namesco Limited
Admin Street: Acton House, Perdiswell Park
Admin City: Worcester
Admin State/Province: England
Admin Postal Code: WR3 7GD
Admin Country: GB
Admin Phone: +44.8453633630
Admin Phone Ext:
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Admin Email: [email protected]
Registry Tech ID: C132253561-LROR
Tech Name: Namesco Limited
Tech Organization: Namesco Limited
Tech Street: Acton House, Perdiswell Park
Tech City: Worcester
Tech State/Province: England
Tech Postal Code: WR3 7GD
Tech Country: GB
Tech Phone: +44.8453633630
Tech Phone Ext:
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Tech Fax Ext:
Tech Email: [email protected]
Name Server: NS0.PHASE8.NET
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DNSSEC: unsigned
URL of the ICANN Whois Inaccuracy Complaint Form: https://www.icann.org/wicf/
>>> Last update of WHOIS database: 2017-09-27T11:57:43Z <<<

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  REFERRER http://www.pir.org/

  REGISTRAR Public Interest Registry

SERVERS

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  TYPE domain

DOMAIN

  NAME chordoma-uk.org

  HANDLE D167324216-LROR

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OWNER

  HANDLE C132253558-LROR

  NAME Fitz-Gibbon Gerald

  ORGANIZATION Gerald Fitz-Gibbon

ADDRESS

STREET
19 St Peters Road

  CITY Twickenham

  STATE Greater London

  PCODE TW1 1QY

  COUNTRY GB

  PHONE +44.2088928921

  EMAIL [email protected]

ADMIN

  HANDLE C132253559-LROR

  NAME Administrator Domain

  ORGANIZATION Namesco Limited

ADDRESS

STREET
Acton House, Perdiswell Park

  CITY Worcester

  STATE England

  PCODE WR3 7GD

  COUNTRY GB

  PHONE +44.8453633630

  EMAIL [email protected]

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  HANDLE C132253561-LROR

  NAME Namesco Limited

  ORGANIZATION Namesco Limited

ADDRESS

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Acton House, Perdiswell Park

  CITY Worcester

  STATE England

  PCODE WR3 7GD

  COUNTRY GB

  PHONE +44.8453633630

  EMAIL [email protected]

  REGISTERED yes

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