Rare Disease Day 2009

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives

Thus the aim of the day is to reinforce their importance as:

1. A public health priority

2. The need for Centres of Expertise

Other main objectives of Rare Disease Day are to:

1. Raise awareness on rare diseases

2. Strengthen one voice of patients

3. Give hope and information to patients

4. Bring stakeholders closer together

5. Coordinate policy actions in different countries Inspire continued growth of the awareness of rare diseases

6. Get equity in access to care and treatment Awareness raising events will take place in each participating country.

7. To find out what is happening in your country, click here.

Who can take part?

Anyone who wants to - everyone’s invited!

Rare Disease Day 2009 is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level.The more participants, the more impact for the Day, and the more we’ll be able to do for patients. If you are a patient or an organisation representing patients with rare diseases, tell your story here.

Ideas for supporting the campaign:

• Coordinate letter writing or email campaign to local or national policy and decision makers
• Send a press release to the media
• Organise a visit of an MEP/ health minister to a Centre of Expertise
• Organise interviews with the media
• Organise fund-raising events
• Organise events around rare diseases and the topics at heart of patients
• Approach a special/VIP to be the patron of the day
• Give awards to people who have acted for the cause of rare disease patients
• Hold a competition centred on rare diseases
• Set up a help line to respond to enquiries
• Display posters, images or other awareness raising displays
• Distribute stickers and flyers
• Make appointments to meet with your local & national authorities