Join us in recognizing Rare Disease Day® on 28 February! – ELPA – European Liver Patients Association


2015-02-28 09:27

Please join us in recognizing Rare Disease Day® on 28 February!

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

This year’s Rare Disease Day theme is Living with a Rare Disease

The theme is intended to pay tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with patients living with rare diseases.

This is a great opportunity to educate people about rare liver diseases while also showing solidarity with other families touched by rare diseases all across the globe.

There are many ways to get involved!  Here’s a small sample:

  • Highlight Rare Disease Day on your Facebook or Twitter page.  Use the hashtag #raredisease to join the conversation.
  • Share your story.  You can upload a photo, video or written message on the Rare Disease Day website.  Take a look at some of the stories from other rare disease families for inspiration.
  • Organize a community awareness event.  Since Rare Disease Day began in 2008, participants have led public marches, delivered informative lectures and conducted meetings with local leaders.

If you’re still not sure how you’d like to get involved, start by visiting – that’s where you can find information about the different types of awareness activities to participate in.

And don’t forget to pass this email on to your family and friends – let’s raise awareness of and other rare liver diseases and make this the most successful Rare Disease Day ever!