Rare Disease Day 2012

The 2012 edition of PHA Europe’s “Breathtaking” awareness raising campaign was successfully launched on Rare Disease Day in Brussels on 29th February 2012.

The campaign launch event took place in central Brussels, with a number of activities taking place, including a very well known Belgian dance group performing a routine reflective of the impact of PH and “Breathtaking” postcards and materials, blue lip balms and blue lollipops being handed out to passers-by in the historical Galerie de la Reine.
A press conference was organized with key Belgian PH medical opinion leaders Prof. Marion Delcroix and Prof. Jean-Luc Vachiéry, representatives of the Belgian Flemish and French-speaking PH patient associations and PHA Europe President Gerald Fischer as speakers. The Brussels event had over 300 pieces of international media coverage with an estimated reach of 2,5 million.
Many other interesting and exciting “Breathtaking” campaign activities were organized around Rare Disease Day 2012 by PHA Europe member associations in 16 other countries: Austria, Bulgaria, Czech republic, Finland, Germany, Latvia, Hungary, Italy, Norway, Slovakia, Slovenia, Spain, Poland, Portugal, Sweden and Switzerland.

For a full report and photos of our campaign please download our Mariposa News Spring 2012 (special) edition here.

 

Giuliana, Italy
I wish for the tulips I planted yesterday to flower and that I’ll be so busy planning my wedding that I’ll forget about PH!

Giuseppe, Switzerland
Healthy people have a lot of dreams. Sick people have only one.

Radu, Romania
I dream to still be around to see my 18 year old son become an architect.

Nina, Switzerland
I want to be cured and have a pony.

Tuulia, Finland
I hope to live a good life in spite of illness and that one day there will be a cure.

Jennifer, USA
I hope to feel better and to train to be a nurse.

Jana, Slovakia
I am on a waiting list for lung transplantation and hope that the operation will take place in the next 6 months.

Marion, France
I dream to be able to dance and party ! Walk in the mountains… and swim !

Patrik, Sweden
My dream is that a cure will be found for my son and for everybody else who suffers from PH.