Share4Rare platform 2021 activities

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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)

Register here


Caring for caregivers and patients in pandemic times

Webinar on the 12th 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 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

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