Other content

This section is dedicated to practical issues helpful for patient advocates such as Social Media and Communication as well as presentations on projects in which EURORDIS is a partner that promote patient involvement.

 

#RealLifeVampire

A presentation on an example of how to use social media for a patient advocacy campaign.

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Social Media for Patients and Researchers

Presentation on using social media by Rob Camp.

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The European Clinical Research Infrastructure Network (ECRIN)

A slideshow presentation on the ECRIN’s role in European medicine, developing multinational clinical research across the continent to supplement the fragmentation of individual health and legislative systems.

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Compassionate Use Programme Case Study

Real-world experience of patients negotiating compassionate use.

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Laboratory Experiment

A presentation on how to extract DNA from a kiwi fruit.

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PROs and multistakeholder meetings

A presentation by Elizabeth Vroom on Patient Reported Outcomes updated in 2017.

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When patients take the lead

A presentation from Julián Isla Gómez about patients taking the lead and becoming experts on rare diseases, updated in 2017.

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Communication and Social Media

A slideshow presentation on how to build an online voice and work smarter in a digital world to benefit the rare disease community.

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COST’s clinical application in rare diseases

A slideshow presentation on the basics of medical research, defining evidence-based medicine and its risks, and the life-cycle of drug development.

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The European Patients’ Academy on Therapeutic Innovation (EUPATI)

A slideshow presentation on the EUPATI: what they do and how they improve the understanding and safety of medicine development.

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The European Clinical Research Infrastructure Network (ECRIN)

A slideshow presentation on the ECRIN’s role in European medicine, developing multinational clinical research across the continent to supplement the fragmentation of individual health and legislative systems.

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RD-Connect: A Unified Platform for Rare Disease Research

A slideshow presentation on the organisation aimed at making data generated by the IRDiRC’s projects widely and rapidly available to the rare disease research community in order to enhance and accelerate discoveries in the field.

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RareConnect: A Rare Disease Community

EURORDIS’ website where you can find an online community that’s right for you. Meet, share and learn from your peers and medical experts.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases