The RARE Network has produced a podcast entitled " 2020, an unusual year for rare disease research". This special episode on the Rare Diseases Foundation presents its missions and offers a vision of the impact of the year 2020 on rare disease research.
To listen, here is the link: https://bit.ly/3rA66bM
The two speakers are :
- Mrs. Célia MERCIER, Regional Manager for the Ile de France region in charge of the promotion of research and academic partnerships at the Foundation For Rare Diseases.
- Pr Damien SANLAVILLE, University Professor, Hospital Practitioner, Head of the Genetics Department, Cytogenetics Laboratory, Hospices Civils de Lyon
The journalist is Mr Cyril CASSARD.
The Pyramidaleagency has been involved in rare diseases for more than 10 years and wanted to become more involved in the fight against diagnostic errancy. The podcast channel "RARE à l'écoute" was born from a desire: how to inform doctors and patients about rare diseases, a real public health issue?
The podcast format, short, mobile and dynamic, allows you to listen, episode after episode, to interviews with experts for each disease: how to identify symptoms, facilitate screening, improve management and patient care... and above all, to transmit the contact information of the real sources of information, which are the health networks, the expert centers and the patient associations.