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.nn#S4RMonth 2021 activities:nnThe role of genetics in the diagnosis of rare diseasesnnWebinar on the 4th Feb, 17:00 CET. Speakers:nnDr. Gemma Marfany, PhD (genetist, UB, CIBERER)nnDr. Lluís Montoliu, PhD (genetist, CNB-CSIC, CIBERER)nnRegister herenn nnCaring for caregivers and patients in pandemic timesnnWebinar on the 12th Feb, 18:00 CET. Speaker:nnÀngels Ponce, (family therapist, HSJD)nnRegister herenn nnBurden of MelanomannFebruary 2021 – exact dates coming soon!nn nnChildhood Cancer and Rare Tumours WeeknnCampaign on social media from 15th-20th Feb.nnFamilies will be encouraged to answer questions on:n

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  • quality of life

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  • effects of the treatments

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  • impact of COVID-19

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nOn Facebook, Twitter, LinkedIn and Instagramnn nnHow to navigate psychological care in NMDs though each life cyclennYouTube / Facebook lifestream on the 26th Feb. Speakers:n

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  • Jana Popova, (patient advocate, EAMDA, EPF)

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  • Janet Hoskin, (senior lecturer UEL, Action Duchenne)

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  • Irene Zschaeck, (psychologist at NMD unit, HSJD)

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n nnMore information at info@share4rare.org

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