Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News!
We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with David Kříž from the Lupus Group of Revma Liga Česká Republika, who talked to us about the fantastic work the organisation is doing, the needs of lupus patients in the Czech Republic and much more!
How do you keep in touch with your members?
We stay in touch with the members of Revma Liga ČR through regular newsletters, emails, social media, and our website. We also organize meetings, events, and professional seminars where members can engage and share their experiences.
Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting, etc.)?
Yes, in the past year we focused on events such as World Arthritis Day and other awareness campaigns related to rheumatic diseases. We hosted webinars, recorded several videos, and organised meetings where we shared up-to-date information on treatment and prevention.
Have there been any circumstances during the pandemic that changed the way of living with lupus?
The pandemic brought increased stress and isolation, which affected patients with rheumatic diseases, including lupus. Many of our members had limited access to medical care and physiotherapy, which increased the need for digital health services and virtual support.
Has Digital Health improved or changed in your country?
Not significantly. Although the pandemic accelerated the use of digital health, for instance through telemedicine, there is still a lack of a comprehensive approach to the issue. Our organization is working hard to support this topic and is showing the way through its activities.
What kind of support would you most need in your country for lupus?
We most need to raise awareness of lupus among the public and healthcare professionals. We would also appreciate greater availability of specialised centres focusing on lupus, and mental health support for patients.
Is there anything you think Lupus Europe could help your organisation with?
Lupus Europe could help us by sharing international experiences and best practices in the treatment of lupus. Collaboration on campaigns and exchanging information could increase awareness of this disease in the Czech Republic as well.
Is there any topic/area you think Lupus Europe should focus on, or where European collaboration would make sense?
European collaboration would make sense in the research of new treatments and increasing the availability of innovative drugs. Joint campaigns aimed at raising awareness and early diagnosis of lupus would also be highly valuable.
Are you aware of the Lupus Europe Member Capacity Building Program?
Yes, we are aware of the program and see it as a great opportunity for the development of our organisation, as well as for sharing experiences with other member countries.
Could you tell us a bit about a dream you have as a group?
Our dream is to ensure that every patient with a rheumatic disease in the Czech Republic has easy access to the latest treatments and expert care. We also want to raise public awareness of these diseases and ensure a better quality of life for all patients.
