Tag: Data Collection and Sharing

Advancement of Treatments for Rare Diseases

Advancement of Treatments for Rare Diseases

The two-day event will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention, diagnosis, and treatment.
P066986-205445

Survey re-opened: help pinpoint where consultancy makes the biggest difference in rare disease research

Community input invited on practical consultancy needs in rare disease research.
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Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach

On November 12 at 11:00am (GMT+3) , IBG RareBoost will host Dr. Başak Uysal from the ERDERA Coordination Team. She will deliver a presentation titled “Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach.”
Ai Exhibition

EMA opens public consultations on patient experience data and use of external controls

EMA invites feedback to strengthen how the EU generates and uses evidence that reflects what matters to patients, including in rare diseases
FAIR Training Webinar ERDERA

Global audience joins FAIR Training Webinar to strengthen data practices in rare disease research

A successful training event with 350 registrations from 58 countries and daily attendance averaging 160 participants
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What to expect at the FAIR Training Webinar 2025

Three afternoons of expert talks, case studies and interactive sessions to explore the value, practice and future of making rare disease data FAIR.
Ronald Cornet

“Data is the fuel of ERDERA’s mission to enhance our insights in rare diseases, to expedite diagnosis, and to find new treatments”

ERDERA interviews Ronald Cornet
Fair-Training-Program-2025-

FAIR Training Program 2025 – 2027 Part 1 opens registration

Dravet syndrome: Insights into seizure and speech progression from registry data

Analysis of registry data offers critical insights into the progression of seizures and speech development in patients with Dravet syndrome.
Daria YT

Rare disease day 2025: ERDERA charts the path forward in collaborative research

ERDERA's

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