Save the Date: Wednesday 15 May 2024, 18:30-19:30 CET
The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges faced by immunological rare disease patients and their caregivers.
In the long run, this new webinar series will serve as a vital resource for information, support, and networking within the ERN RITA community, while leading to a video library with trusted and valuable information for patients. Overall, we aim for enhanced patient education and empowerment, improved patient-caregiver interaction, increased awareness of rare diseases, strengthened sense of community and support within ERN RITA and potential for increased patient engagement in research and clinical trials.
Topics proposed for these webinar series will focus on crossover issues across the four RITA streams (PIDs, autoimmune, autoinflammatory and pediatric rheumatology disorders) rather than stream-specific issues. These sessions will cover a broad range of topics, including but not limited to:
- Disease-specific educational content.
- Managing and coping with rare diseases.
- Patient advocacy and rights.
- Telemedicine and remote care.
- Interactive Q&A sessions with healthcare professionals.
- Testimonials and success stories.
- Support group discussions.
- Updates on the latest research and treatments in lay language
Target Audience: Rare disease patients, their caregivers, healthcare professionals, and researchers affiliated with ERN RITA. By engaging these stakeholders, we aim to create an inclusive and informative platform that bridges the gap between patients and the medical community.
For this third session, we will discuss disease inheritance patterns: how are hereditary immunological conditions passed on, and how to manage high-risk pregnancy.
Invited speakers: Isabelle Meyts (Department of Immunology and Microbiology, Laboratory for Inborn Errors of Immunity, Department of Paediatrics, University Hospitals Leuven and KU Leuven, Belgium) and Laura Andreoli (Rheumatology and Clinical Immunology Unit, ASST Spedali Civili, Department of Clinical and Experimental Science, University of Brescia, Italy).
Chaired by: Christophe Normand (ENCA and Kourier Representative, France) and Savino Sciascia (Università degli Studi di Torino, Italy)
