Share4Rare platform 2021 activities
The Share4Rare platform is a safe space where patients and carers can connect, share knowledge and get involved in scientific research.
#S4RMonth 2021 activities:
The role of genetics in the diagnosis of rare diseases
Webinar on the 4th Feb, 17:00 CET. Speakers:
Dr. Gemma Marfany, PhD (genetist, UB, CIBERER)
Dr. Lluís Montoliu, PhD (genetist, CNB-CSIC, CIBERER)
Caring for caregivers and patients in pandemic times
Webinar on the 12th Feb, 18:00 CET. Speaker:
Àngels Ponce, (family therapist, HSJD)
February 2021 – exact dates coming soon!
Childhood Cancer and Rare Tumours Week
Campaign on social media from 15th-20th Feb.
Families will be encouraged to answer questions on:
- quality of life
- effects of the treatments
- impact of COVID-19
On Facebook, Twitter, LinkedIn and Instagram
How to navigate psychological care in NMDs though each life cycle
YouTube / Facebook lifestream on the 26th Feb. Speakers:
- Jana Popova, (patient advocate, EAMDA, EPF)
- Janet Hoskin, (senior lecturer UEL, Action Duchenne)
- Irene Zschaeck, (psychologist at NMD unit, HSJD)
More information at email@example.com