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 4^th Feb, 17:00 CET. Speakers:

Dr. Gemma Marfany, PhD (genetist, UB, CIBERER)

Dr. Lluís Montoliu, PhD (genetist, CNB-CSIC, CIBERER)

Register here

 

Caring for caregivers and patients in pandemic times

Webinar on the 12^th Feb, 18:00 CET. Speaker:

Àngels Ponce, (family therapist, HSJD)

Register here

 

Burden of Melanoma

February 2021 – exact dates coming soon!

 

Childhood Cancer and Rare Tumours Week

Campaign on social media from 15^th-20^th 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 26^th 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 info@share4rare.org