Rare Disease Day (RDD) was established in 2008 by the European Organization for Rare Diseases (EURORDIS) to raise awareness of rare diseases and improve access to treatment for rare disease patients and their families. It is held on the last day of February. Even though the campaign started as a European initiative, it has progressively become a global event, with the USA joining in 2009, and it saw the participation of 84 countries worldwide in 2014.
PHA Europe first took part in celebrations for Rare Disease day in 2011. Organizing this campaign was a landmark event for PHA Europe as it was the first time that pulmonary hypertension patient associations in Europe united to raise awareness of the disease. A common theme and materials were created and shared by all those taking part to symbolize the shortness of breath that patients experience in their every day life. “Breathtaking” campaign activities were organized in 7 countries in 2011 and in 17 the following year. The PHA Europe 2012 RDD campaign alone had over 300 pieces of international media coverage with an estimated reach of 2,5 million.
For a full report and photos of PHA Europe’s RDD campaigns see:
Since the setting up of a dedicated international World Pulmonary Hypertension Day on May 5 PHA Europe’s awareness campaigns take place on or around this date, but we still support RDD in many other ways.
Rare Disease Day 2015
PHA Europe is active in promoting and supporting RDD 2015 in a number of ways:
- it has posted the RDD logo and countdown on the home page of its website. This links directly with the RDD website.
- it is an official “friend” of RDD – see: http://www.rarediseaseday.org/friends/
- it regularly posts news of RDD on its Facebook page and Twitter account
- it has warmly encouraged its members to take part in RDD by organizing national RDD events
- it will be present in Brussels on February 24 at the RDD symposium and Black Pearl Gala Dinner.