New RITA Patient-Centered Webinar! Register now

Save the Date: Wednesday 26 June 2024, 18:00-19:00 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:

  1. Disease-specific educational content.
  2. Managing and coping with rare diseases.
  3. Patient advocacy and rights.
  4. Telemedicine and remote care.
  5. Interactive Q&A sessions with healthcare professionals.
  6. Testimonials and success stories.
  7. Support group discussions.
  8. 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 fourth session, we will discuss the social rights of a person living with a rare disease by a representative of EURORDIS and the patient perspective in advocacy of a rare immunological disease: the case of Malta – by a representative of the Maltese association of patients with RMDs

Invited speakers: Raquel Castro (EURORDIS), Sina Bugeja

Chaired by: Julie Power (Vasculitis Ireland Awareness), Zoi Anastasa (Vasculitis UK)