A public health issue
In France more than 3 million people are affected by one of the 7000 rare diseases known to date.
70% start in children.
Most often they are severe, chronic illnesses with a progressive evolution which considerably affect the quality of life of sick people.
But the reality is that one in two people do not have a precise diagnosis.
Very professionally involved in rare diseases and rare cancers, Virginie Druenne and her partner Cyril Cassard had the idea in 2020 of developing the first podcast dedicated to all rare diseases.
We've been working in Rare Diseases for years.
Each time it's the same issue: work on screening to limit diagnostic error as much as possible.
But it is not easy to reach doctors, who in their patient population have only a very low probability of meeting a patient suffering from a given rare disease.
Virginie Druenne, ambassador of RARE listening.
This initiative is part of the objectives of the 3rd National Plan for Rare Diseases (ref 3):
COMMUNICATE and TRAIN by promoting the sharing of knowledge and know-how on rare diseases.
Allow a RAPID DIAGNOSIS for everyone, in order to reduce wandering and diagnostic impasse.
The bet of the podcast is the choice of channel: faced with doctors who do not necessarily have the time to train, being able to listen to a Podcast episode
where you want when you want
allows you to transmit the information that emerges later, in a timely manner with patients.
This podcast is primarily intended for all Health Professionals, in the city and in the hospital, but also for all those concerned by rare diseases: the content is scientific, medical, edited by recognized experts in their fields.
Today, doctors cannot read everything.
If a medium like this makes it possible to synthesize information on rare diseases, by highlighting key elements selected by experts, it is very beneficial for health professionals as well as for patients and families.
Dr G. Baujat, Medical genetics for RARE listening
It only takes a few minutes to listen to it stick in your head, and if you are confronted with a patient concerned, even 10 years later, it can save a life.
Dr S. Dalkiliç, Gynecologist-obstetrician for RARE listening
A unique podcast
RARE listening works hand in hand with several health sectors.
For each rare disease mentioned, we approach by episode, the symptoms, the diagnostic tools, the differential diagnoses, the treatments and links to the health sectors concerned.
Testimonials from patients and/or patient associations are also present, they will tell their story, their suffering and their relief when they have been diagnosed and taken care of.
We dream of finding such content when we are a loved one or a patient with a rare disease.
Eliott, a young patient with a rare disease
Also present on social networks, Rare listening has made it possible to federate and bring together health professionals, associations, patients all striving towards the same objective: to limit diagnostic wandering and to work for early detection and better care. .
It's a real success: more than 200 episodes are currently available and the audiences are exceptional, our community of doctors and patients is growing day by day.
In just 3 years, Rare Listening is now part of the landscape of rare diseases.
Virginia Druenne
Our commitments for 2023
Currently listening, we find experts in Fabry Disease, and many rare diseases will be on the air this year.
To cite just a few examples, the next seasons will deal with generalized pustular psoriasis and ALS (Amyotrophic Lateral Sclerosis) or Charcot's disease, which Stephen Hawking suffered from, with the support of the FilSLAN sector.
Virginia Druenne
The challenge of gene therapy, the next revolution whose contours remain to be drawn, is major in rare diseases.
Under the aegis of Rare listening, several round tables of experts will shed the necessary light on these innovations.
Regional programs are also being launched this year: live broadcasts from several towns in France that promote the sharing of local-regional initiatives and enable patients with rare diseases to emerge from isolation.
I am thinking in particular of spinal muscular atrophy, where we have the opportunity to work in partnership with the AFM-Téléthon for Strasbourg, Bordeaux, Lille and Lyon.
Virginia Druenne
Rare diseases don't just happen to others…look at Céline Dion, suffering from
Stiff Man's Disease
, to whom we have dedicated a special episode on
Listening to Rare
.
Talking about it, identifying the right care circuit, is a first step towards better care.
Virginia Druenne
Free podcast, available on the major Podcast platforms (Apple, Google, Deezer, Spotify), Youtube, and on the Internet www.rarealecoute.com
Rare listening:
Apple Podcasts: https://podcasts.apple.com/fr/podcast/rare-%C3%A0-l%C3%A9coute/id1522075627
Google Podcasts: https://www.google.com/podcasts?feed=aHR0cHM6Ly9mZWVkcy5wb2RjYXN0aWNzLmNvbS9wb2RjYXN0aWNzL3BvZGNhc3RzL3Jzcy83NzlfZTBkNzQ2NTk2Y2M2MWYyNzNmOWFiOWRlMmQxnMTJzlMTEuc
Deezer: https://www.deezer.com/show/1455922
Spotify: https://open.spotify.com/show/4yTUfmLyU8aKGAIV6xx6OG
Rare social networks listening:
Facebook: https://www.facebook.com/profile.php?id=100063855331166
Instagram: https://www.instagram.com/rarealecoute.podcast/?hl=fr
LinkedIn: https://www.linkedin.com/company/rarealecoute/?viewAsMember=true
Twitter: https://twitter.com/EcouteRare
Contact :
Website: https://rarealecoute.com/
Email: podcast@rarealecoute.com