Navigation Links
International Rare Disease Day

PARIS, February 24, 2010 /PRNewswire/ --

- "Patients and Researchers: Partners for Life!"

- 28 February Marks the Third Rare Disease Day

For this annual event hundreds of patient groups and their partners organise activities to raise awareness on rare diseases and the 30 million people affected by them in Europe.

Rare Disease Day was launched and is coordinated by the European Organisation for Rare Diseases - EURORDIS (, a federation representing more than 400 patient organisations in 42 countries. The campaign involves rare disease national alliances and patient groups in 40 countries, in the EU as well as in the USA, Canada, Argentina, Australia, New Zealand, Japan, China and Taiwan, amongst others.

The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. 80% have a genetic origin and the majority affects children. Most rare diseases are serious, chronic and life-threatening. Due to their low prevalence, medical experts are also rare, knowledge is scarce, offer for care is inadequate, research is limited and very few cures exist.

This year's theme focuses on the importance of rare disease research. Research represents hope for the millions of rare disease patients without cure today. In the last decade, scientific and medical progress has opened up new opportunities in the field of rare disease research; rare diseases have in turn made major contributions to research and treatment discoveries for more frequent diseases.

Rare Disease Day 2010 highlights the importance of collaboration between patients and researchers. A survey recently conducted by EURORDIS amongst 300 patient organisations representing over a million individual patients in 29 countries - shows that patients are important catalysers of research.

The results of the survey will be presented at a European Workshop organised by EURORDIS, on March 1ST, 2010, in Brussels. The event, co-organised with E-RARE ( in partnership with the European Commission, Orphanet ( and EuroPlan (, will make the case for rare disease research to be included in public funding schemes.

In line with this year's theme, patient organisations are invited to nominate a scientist - who has helped advance research into their disease, to the Rare Disease Research Hall of Fame (39 nominations to date). Individual patients can enter the photo and video contests (more than 300 new entries to date) and share their stories on Facebook (over 6000 fans to date and more than 50 joining each day).

More information on:

Press contact:

Paloma Tejada -Tel : +33-(1)-56-53-52-61 -

SOURCE EURORDIS European Organisation for Rare Diseases

Back to top
SOURCE EURORDIS European Organisation for Rare Diseases
Copyright©2010 PR Newswire.
All rights reserved

Related biology technology :

1. YM BioSciences presents CYT387 and CYT997 data at international cancer conference
2. Orameds Chief Scientific Officer, Miriam Kidron, Ph.D., Chosen to Lecture at the Third International Conference on Advanced Technologies and Treatments for Diabetes in Basel, Switzerland
3. EUCODIS Bioscience Receives EUR 2 Million Cash Injection to Enlarge Product Portfolio and Develop International Markets
4. BioSpec Global Solutions Inc, takes delivery of new TOGs 3000 Home edition for the U.S. and international markets
5. BioProcess International Launches Monthly Asia-Pacific eNewsletter
6. China YCT International Group, Inc. Announces That the State Intellectual Property Office of the Peoples Republic of China has Approved a Patent to its Operating Subsidiary, Shandong Spring Pharmaceutical Co. Ltd.
7. Wound Management Technologies, Inc. Rapidly Expands Its International Presence
8. The International Food Protection Training Institute (IFPTI) Announces 2010 Course Schedule
9. The International Society for Medical Publication Professionals Announces Call for Abstracts for Its 6th Annual Meeting
10. Announcing ISMPP EU 2010 - the First European Meeting of the International Society for Medical Publication Professionals, Royal College of Physicians, London, UK, January 20, 2010
11. Dyadic International Extends Collaboration With The Scripps Research Institute
Post Your Comments:
(Date:11/24/2015)... -- SHPG ) announced today that Jeff Poulton ... th Annual Healthcare Conference in New York City ... EST (1:30 p.m. GMT). --> SHPG ) announced today ... the Piper Jaffray 27 th Annual Healthcare Conference in ... 2015, at 8:30 a.m. EST (1:30 p.m. GMT). --> ...
(Date:11/24/2015)... -- Tikcro Technologies Ltd. (OTCQB: TIKRF) today announced that its Annual General Meeting ... Israel time, at the law offices of ... th Floor, Tel Aviv, Israel . ... Izhak Tamir to the Board of Directors; , election of ... approval of an amendment to certain terms of options granted to our ...
(Date:11/24/2015)... FRANCISCO , Nov. 24, 2015  Twist ... announced that Emily Leproust, Ph.D., Twist Bioscience chief ... Jaffray Healthcare Conference on December 1, 2015 at ... Hotel in New York City. --> ... . Twist Bioscience is on Twitter. ...
(Date:11/24/2015)... ... 24, 2015 , ... InSphero AG, the leading supplier of easy-to-use solutions for ... Aregger to serve as Chief Operating Officer. , Having joined InSphero in ... and was promoted to Head of InSphero Diagnostics in 2014. There she ...
Breaking Biology Technology:
(Date:10/27/2015)... -- Munich, Germany , October ... automatically maps data from mobile eye tracking videos created ... that they can be quantitatively analyzed with SMI,s analysis ... , October 28-29, 2015. SMI,s Automated Semantic Gaze ... tracking videos created with SMI,s Eye Tracking Glasses ...
(Date:10/26/2015)... 26, 2015 ... adds Biometrics Market Shares, Strategies ... well as Emerging Biometrics Technologies: Global ... its collection of IT and Telecommunications ... --> . ...
(Date:10/26/2015)... , Oct. 26, 2015  Delta ID Inc., ... authentication to mobile and PC devices, announced its ActiveIRIS® ... the arrows NX F-02H launched by NTT DOCOMO, INC ... F-02H is the second smartphone to include iris recognition ... in ARROWS NX F-04G in May 2015, world,s first ...
Breaking Biology News(10 mins):