‘Precious moments’ is the key theme of this year's Rare Disease Day in the Czech Republic, taking place on 29th February 2024. During the whole month, our patient organisation HAE Junior is joining the worldwide campaign promoting rare disease awareness, including HAE.

What is Rare Disease Day?

The event is internationally coordinated by EURORDIS, which has declared the whole of February as ‘Rare Disease Awareness Month’. At the national level, patient organisations and associations in each country participate in raising awareness. In the Czech Republic, activities are led by the Rare Diseases Czech Republic (also known under the Czech abbreviation ČAVO) organisation. The aim is to bring to the public the stories of people who live with one of the 6000+ rare diagnoses, which also includes HAE. These patients as well as their families often face many obstacles that affect their both physical and mental health, social life or career.

Precious moments as the main focus of this year's campaign

Despite the challenging reality of life with a diagnosis that many physicians are unaware of and which requires long-term, costly treatment, the organisers are trying to show ‘rare patients’ in a brighter perspective. This year's campaign will feature photos of happy moments in their lives, filled with a favourite hobby, sport, loved ones, animal friends or spent alone with a book.

Landmark buildings in the Czech Republic and around the world will light up the official colours of Rare Disease Day

As you stroll around Prague, Brno or Ostrava on the evening of 29th February, you may notice the pink, blue and green lighting of some buildings. This is part of an annual rare disease campaign that aims to reach out to the widest public, including walkers on the streets of major cities.

Rare Disease Day in HAE Junior

As a member organisation of both ČAVO and EURORDIS, HAE Junior is again joining the annual Rare Disease Day awareness movement. In addition to the social media campaign mentioned above, we plan to publish a new patient story on our website. And thanks to the invitation from the ČAVO, we look forward to participating in an expert symposium focused on rare diseases, held by Zdravotnický deník journal, on the morning of 29th February 2024, followed by an evening theatre performance of the play 'Na každý chvilce záleží (Every Moment Matters)’, starring the famous Czech actress Klara Trojanova.

And because spending ‘precious moments’ (not only) with loved ones is also crucial for our Czech HAE community, we plan to mark the rare disease awareness month also by preparing this year's HAE Junior’s Family educational camp, which will take place in Prague in April.

Finally, having started our Rare Disease Day 2024 campaign, we would like to tHAEnk everyone who shows commitment and goodwill to help make life more joyful for our dear friends at HAE Junior and all around the globe!