Ahead of the Rare Disease Day 2023, which falls on 28 February, our patient organisation has been busy with raising awareness on social media and not only.
The movement aims to highlight stories & experiences of people living with one of the 6000+ rare diagnoses, one of which is also the rare immunity disorder HAE. These patients and their families often face many obstacles which affect both their physical and mental health, career and social engagement. At international level, the event is coordinated by EURORDIS which declared 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, the Czech Association for Rare Diseases (ČAVO) leads the awareness campaign as the umbrella organisation.
Although diagnoses belonging to rare diseases (RD) are relatively infrequent, according to EURORDIS, over 300 million people are living with RD worldwide. Together, the number of rare disease patients would equal the population of the 3rd largest country in the world.
This year's theme ‘Alone we are rare, together we are strong‘ highlights the social dimension of the whole. Because although there aren't many people with rare diseases, these diagnoses have a serious impact not only on the quality of their lives, but also on their families, local and international communities, as well as the health and social systems. Collaboration and complex care are therefore essential to mitigate these impacts:
‘There is still a general lack of awareness about rare diseases. Even doctors and health care professionals often know little about them. Information and experience are lacking. In addition, these illnesses are often complex and require special care and cooperation from many specialists. Centralisation of the care is therefore one of the crucial measures to help improve the situation. The whole health system ought to be set up in a way so that patients seeking a diagnosis are directed to highly specialised centres instead of spending years unsuccessfully ‘trapped’ within the health system.’ ČAVO emphasises the importance of collaboration in their press release.
As a member of ČAVO and EURORDIS, HAE Junior regularly and actively participates in the annual RDD awareness campaign. During February, we have been running a campaign on social media and recently published a new interview. We also couldn't miss attending the policy seminar on rare diseases, organised by the Health Committee in the Chamber of Deputies, in Prague, on 28 February. To watch the online stream, please, follow this link.
And because the theme of ‘rarity’ guides our activities not only in February, but throughout the year, we are working hard on preparations for the fourth annual edition of the HAE Junior Summer Camp. The camp, whose motto this year is ‘Rare Friends’, will take place in July 2023, in Vysocina region.
On the occasion of world Rare Disease Day, we would like to dedicate our big ‘tHAEnk you’ to all people who show commitment and goodwill to help make life more joyful for our rare friends in HAE Junior and around the world!