Navigation Links
International Rare Disease Day
Date:2/24/2010

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 (http://www.eurordis.org), 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 (http://www.e-rare.eu) in partnership with the European Commission, Orphanet (http://www.orpha.net) and EuroPlan (http://www.europlanproject.eu), 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: http://www.rarediseaseday.org

Press contact:

Paloma Tejada -Tel : +33-(1)-56-53-52-61 - paloma.tejada@eurordis.org

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:
*Name:
*Comment:
*Email:
(Date:10/9/2017)... ... ... At its national board meeting in North Carolina, ARCS® Foundation President ... and Astronomy, has been selected for membership in ARCS Alumni Hall of Fame ... Prize in Fundamental physics for the discovery of the accelerating expansion of the universe, ...
(Date:10/7/2017)... Phoenix, Arizona (PRWEB) , ... ... ... than 15 years’ experience providing advanced instruments and applications consulting for microscopy ... the in-house expertise in application consulting, Nanoscience Analytical offers a broad range ...
(Date:10/6/2017)... ... October 06, 2017 , ... ... the healthcare and technology sector at their fourth annual Conference where founders, investors, ... inspiring speakers and the ELEVATE pitch competition showcasing early stage digital health and ...
(Date:10/5/2017)... ... 05, 2017 , ... Understanding the microbiome, the millions of bacteria that live ... You Are My Future, the newest exhibit on display at the University City Science ... condition through the lens of the gut microbiome. , Gut Love opens October ...
Breaking Biology Technology:
(Date:4/6/2017)... April 6, 2017 Forecasts by ... Document Readers, by End-Use (Transportation & Logistics, Government & ... Gas & Fossil Generation Facility, Nuclear Power), Industrial, Retail, ... Are you looking for a definitive report ... ...
(Date:4/3/2017)...  Data captured by IsoCode, IsoPlexis Corporation,s ... statistically significant association between the potency of ... objective response of cancer patients post-treatment. The ... cancer patients will respond to CAR-T cell ... to improve both pre-infusion potency testing and cell ...
(Date:3/28/2017)... 2017 The report "Video Surveillance ... Servers, Storage Devices), Software (Video Analytics, VMS), and Service ... Forecast to 2022", published by MarketsandMarkets, the market was ... projected to reach USD 75.64 Billion by 2022, at ... base year considered for the study is 2016 and ...
Breaking Biology News(10 mins):