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eurordis tv contact us the voice of rare disease patients in europe donate about eurordis who we are what we do international activities membership library our funding donate contact us about rare diseases what is a rare disease? find information or help a public health priority undiagnosed rare diseases rare disease policy eu rare disease policy national rare disease policy international policy fact sheets decide rare barometer programme orphan drugs & treatments what is an orphan drug? improve the safety of your medicines compassionate use role of eurordis patient advocates involvement access to orphan drugs health technology assessment eurordis round table of companies (ertc) list of the latest marketing authorisations and orphan medicinal products designations living with a rare disease services & trainings eurordis open academy specialised social services rareconnect help line services eurordis community advisory board (cab) programme get involved individuals patient groups companies news & events eurordis events members’ news and announcements international rare disease events rare diseases in the arts eurordis webinars eurordis press releases enews home languages en fr de es it pt ru apply for the eurordis winter school 2019! the eurordis eurocab programme nominate a star! veronica’s story >> apply for the eurordis winter school on scientific innovation & translational research >> create a community advisory board for your disease >> nominate a rare disease star for a eurordis black pearl award >> living with allan-herndon-dudley syndrome get involved take part in online training via the eurordis open academy -- read more... featured event register for october workshop on how patients and researchers can work together through community advisory boards -- read more... international 2nd x-linked hypophosphataemic rickets symposium, 26 september, greece -- read more... patients and services rareresourcenet is a network of rare disease resource centres aiming to advance integrated care -- read more... actions join rare barometer voices, the eurordis survey initiative! -- read more... member's corner 47th annual general assembly of the european alliance of neuromuscular disorders associations, 20 - 23 september, czech republic -- read more... rareconnect.org online communities subtitle article -- rareconnect.org, together with the world's leading rare disease patient groups, offering global online communities allowing people to connect around issues which affect them while living with a rare disease. new online community for people living with mepan syndrome, a neurometabolic disorder to find out more about how you can join rareconnect, contact us . who we are eurordis-rare diseases europe is a unique, non-profit alliance of 808 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in europe. our members our mission statement search for: rare disease day 2016 eurordis coordinates rare disease day. check out the events happening around the world! -- ecrd 2014 see the twitter feed of ecrd 2014 berlin. -- eurordis awards 2019 nominate a star of the rare disease community! nominations for the eurordis black pearl awards 2019 are now open until 20 august. it is an opportunity to honour the outstanding efforts of individuals and organisations across the rare disease community. eurordis tv watch eurordis tv's video of the week! aniridia: my story social media tweets by @eurordis   -- news find out the latest news from the rare disease community! language english french german spanish italian portuguese russian subscribe eurordis.org at a glance about eurordis about rare diseases rare disease policy orphan drugs & treatments living with a rare disease services & trainings get involved news & events eurordis tv contact us privacy policy cookie policy conditions of use about this website editorial board we comply with the honcode standard for health trustworthy information we are grateful for the financial support of the eurordis website by: this website received funding under an operating grant from the european union’s health programme (2014-2020) the voice of rare disease patients in europe the international voice of people living with rare diseases, rare diseases international is a eurordis initiative bringing together patients, families and experts to share experiences in a moderated multilanguage forum, rareconnect is a eurordis initiative the rare barometer programme is a eurordis initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers. an international awareness raising campaign taking place on the last day of february each year, rare disease day is a eurordis initiative join the largest gathering of rare disease stakeholders across europe, at the biennial european conference on rare diseases and orphan products. ecrd is a eurordis initiative

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Informations Whois

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Domain Name: EURORDIS.ORG
Registry Domain ID: D44921683-LROR
Registrar WHOIS Server: whois.gandi.net
Registrar URL: http://www.gandi.net
Updated Date: 2017-08-28T09:25:32Z
Creation Date: 2000-11-23T08:49:06Z
Registry Expiry Date: 2018-11-23T08:49:06Z
Registrar Registration Expiration Date:
Registrar: Gandi SAS
Registrar IANA ID: 81
Registrar Abuse Contact Email: abuse@support.gandi.net
Registrar Abuse Contact Phone: +33.170377661
Reseller:
Domain Status: clientTransferProhibited https://icann.org/epp#clientTransferProhibited
Registry Registrant ID: C5447248-LROR
Registrant Name: EURORDIS
Registrant Organization: EURORDIS
Registrant Street: Plateforme Maladies Rares
Registrant Street: 102 rue Didot
Registrant City: Paris
Registrant State/Province:
Registrant Postal Code: 75014
Registrant Country: FR
Registrant Phone: +33.15653521
Registrant Phone Ext:
Registrant Fax:
Registrant Fax Ext:
Registrant Email: 0c5fe082fb225b27d9df860e75553b18-468772@owner.gandi.net
Registry Admin ID: C7468740-LROR
Admin Name: Yann Le Cam
Admin Organization: EURORDIS
Admin Street: Plate-forme Maladies Rares, 96 Rue Didot
Admin City: Paris
Admin State/Province:
Admin Postal Code: 75014
Admin Country: FR
Admin Phone: +33.156535262
Admin Phone Ext:
Admin Fax: +33.156535215
Admin Fax Ext:
Admin Email: 6670d07cd858481232293cc9aa722254-271627@contact.gandi.net
Registry Tech ID: C33376853-LROR
Tech Name: Patrice Regnier
Tech Organization: Eurordis - European Organization for Rare Diseases
Tech Street: Plateforme Maladies Rares
Tech Street: 102, rue Didot
Tech City: Paris
Tech State/Province:
Tech Postal Code: 75014
Tech Country: FR
Tech Phone: +33.156535214
Tech Phone Ext:
Tech Fax: +33.156535215
Tech Fax Ext:
Tech Email: 1391ff8c5f2d989550ee8fb91f87f615-pr2115@contact.gandi.net
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Name Server: NS0.DNSMADEEASY.COM
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DNSSEC: unsigned
URL of the ICANN Whois Inaccuracy Complaint Form: https://www.icann.org/wicf/
>>> Last update of WHOIS database: 2018-04-16T05:41:40Z <<<

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Access to Public Interest Registry WHOIS information is provided to assist persons in determining the contents of a domain name registration record in the Public Interest Registry registry database. The data in this record is provided by Public Interest Registry for informational purposes only, and Public Interest Registry does not guarantee its accuracy. This service is intended only for query-based access. You agree that you will use this data only for lawful purposes and that, under no circumstances will you use this data to: (a) allow, enable, or otherwise support the transmission by e-mail, telephone, or facsimile of mass unsolicited, commercial advertising or solicitations to entities other than the data recipient's own existing customers; or (b) enable high volume, automated, electronic processes that send queries or data to the systems of Registry Operator, a Registrar, or Afilias except as reasonably necessary to register domain names or modify existing registrations. All rights reserved. Public Interest Registry reserves the right to modify these terms at any time. By submitting this query, you agree to abide by this policy.

  REFERRER http://www.pir.org/

  REGISTRAR Public Interest Registry

SERVERS

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  ARGS eurordis.org

  PORT 43

  TYPE domain
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DOMAIN

  NAME eurordis.org

  HANDLE D44921683-LROR

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STATUS
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OWNER

  HANDLE C5447248-LROR

  NAME EURORDIS

  ORGANIZATION EURORDIS

ADDRESS

STREET
Plateforme Maladies Rares
102 rue Didot

  CITY Paris

  PCODE 75014

  COUNTRY FR

  PHONE +33.15653521

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ADMIN

  HANDLE C7468740-LROR

  NAME Yann Le Cam

  ORGANIZATION EURORDIS

ADDRESS

STREET
Plate-forme Maladies Rares, 96 Rue Didot

  CITY Paris

  PCODE 75014

  COUNTRY FR

  PHONE +33.156535262

  EMAIL 6670d07cd858481232293cc9aa722254-271627@contact.gandi.net

TECH

  HANDLE C33376853-LROR

  NAME Patrice Regnier

  ORGANIZATION Eurordis - European Organization for Rare Diseases

ADDRESS

STREET
Plateforme Maladies Rares
102, rue Didot

  CITY Paris

  PCODE 75014

  COUNTRY FR

  PHONE +33.156535214

  EMAIL 1391ff8c5f2d989550ee8fb91f87f615-pr2115@contact.gandi.net

  REGISTERED yes

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