Newsletter of the NIH Rare Diseases Clinical Research Network
Volume 2, Issue 1. Spring 2011

www.RareDiseasesNetwork.org

In This Issue

Welcome

Spotlight on an RDCRN Consortium: CINCH

How Does A Rare Disease Consortium Work?

Urea Cycle Disorders Consortium Benefits from CTSA Leverage

Coalition of Patient Advocacy Groups (CPAG) in the Spotlight

The Office of Rare Diseases Research (ORDR)

RDCRN Opens 30 New Studies for Patient Accrual

About Spotlight

Past Issues

 

Rare Diseases Headlines:

NIH Researchers Identify genetic cause of new vascular disease – Rare disease is the first discovered in Undiagnosed Diseases Program
>> More

Statement Issued from the 2nd Meeting of the International Rare Diseases Research Consortium
>> More

Featured Event:

Rare Diseases Day 2011
>> More

Spotlight Announcements / Calendar of Events

Joubert Syndrome Biennial Conferences: Advancing Translational Ciliopathy Research, July 13, 2011 - July 16, 2011

International Meeting on Genetic Syndromes of the Ras/MAPK Pathway, July 29, 2011 - July 31, 2011

End of Life Palliative Care National Science Summit, August 10, 2011 - August 12, 2011

>> View More News and Events

Rare Diseases Day was February 28, 2011

Alone we are rare, together we are strong!

Rare Disease Day is an annual, awareness-raising event coordinated by EURORDIS at the international level and National Alliances of Patient Organizations at the national level

February 28th 2011 marked the fourth International Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 countries. On that day hundreds of patient organizations from more than 40 countries worldwide organized awareness-raising activities and converging around the slogan "Rare but Equal".

Hundreds of patient groups and their partners, coordinated by national alliances at the country level, planned a multitude of events to draw attention to rare diseases and the millions of people who are affected by them. Awareness-raising activities took place across Europe, all the way to Russia, Georgia and Armenia, as well as in the US, Canada and as far as Australia, New Zealand, China and Japan!

Find out about the EURORDIS activities on Rare Diseases Day: http://www.rarediseaseday.org/country/eu/europe

Find out about the Rare Disease Day USA activities: http://rarediseaseday.us/

A Brief History of Rare Diseases Day

February 29th 2008, a "rare day", was the First Rare Disease Day in Europe, organized by EURORDIS. For the first time patient groups from different countries and representing a variety of diseases collaborated on a large-scale awareness-raising campaign in favor of rare diseases.

Each year Rare Disease Day has enjoyed an ever growing number of participating countries and more than a thousand patient organizations organizing events from tree planting to round tables, from marathons to art exhibitions. It has furthered rare disease as a public health priority, has shed light on the need for closer collaboration between patients and researchers, and now continues to underscore the challenges rare disease patients and their caregivers face.