European Federations (EF) are strongly encouraged to participate in the annual Rare Disease Day www.rarediseaseday.org
2012 is a leap year so RDDay will fall once again on a rare day, the 29th of February. It will be the 5th RDDay and should be a very special event.
At the advocacy level, the goal in Europe is to get Rare Diseases higher in the public health and research agendas, and to get more budget for Rare Diseases. This is especially timely since the 3rd EU Public Health Programme and 8th Research Framework Programme are been negotiated now for the period 2014-2020.
The theme in 2012 is Solidarity
The theme is very wide and general. RDD participants could use it to bring forward issues that are important for the rare disease patient community, e.g. reimbursement, access to orphan drugs, healthcare pathways, multidisciplinary care, international research infrastructures, cross border healthcare, pooling of expertise, European reference networks, etc.
See an example of a European Rare Disease Day campaign: PHA “breathtaking” RDD campaign, organised by PHA Europe: PHA Campaign
The main objective of the PHA campaign was to raise awareness.
Pulmonary Hypertension is a rare and incurable lung/heart condition which leads to heart failure or lung transplant. PH is still relatively unknown; late diagnosis and treatment have dramatic effects on prognosis. The differences in access to approved drugs, surgery and transplantation are big across Europe
PHA Europe is a federation created in 2003 that now has 20 member organisations in Europe.
7 member organisations joined the campaign and received flyers, posters and leaflets. Launch events took place in Brussels and Vienna attended by PHAE President and VP. National events took place in Bulgaria, Germany, Hungary, Norway, Poland, Portugal, Spain as well as Czech Republic, Italy and Slovakia
Follow up with Facebook application, videos on Youtube, other events
The national organisations were in charge of printing &distributing material, rental of spaces, organisation of events, media coverage and follow up.
The campaign results are very good, with extensive dissemination of information, great media coverage, increased visibility for PH and the federation and community building.