CONTEXT PATIENT CONFERENCE

CONTEXT PATIENT CONFERENCE 2022 – all eyes on the young & rare – is over and you were phenomenal! 200 participants, 6 hours of talk, 6 ‘young’ patients, 3 experts representing the medical community, self-help organisations, and the pharmaceutical industry, outstanding facilitation team, brilliant graphic recorder, and 20k in donations for patient organisations. Not bad.

And we learnt a lot: about how young people cope with their rare diseases and manage their lives; what it’s like to be born and grow up with a rare disease; how long and painful the search for a diagnosis can be; how it feels to be ‘dependent’ on good, dedicated doctors; how important it is to take the initiative to find the right help; how to deal with prejudices; how valuable it is to exchange experiences and ideas with other patients; or how to find like-minded people and even become a role model for others. The way forward is clear: let’s keep talking! Let’s learn from each other! Let’s be loud! Let’s join forces and act together! Power to the patient!

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You can view the graphic summaries here. They look amazing and you can use them for your patient engagement and advocacy work.

DOWNLOADS – PATIENT JOURNEYS – YOUNG & RARE

CPC 2022: Was hab ich?
CPC 2022: Diagnose und was jetzt?
CPC 2022: Leben mit einer seltenen Erkrankung

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CONTEXT PATIENT Family

BURAK (BETROFFENER, MUKOVISZIDOSE) / FABIENNE (BETROFFENE, HYPOPARATHYREOIDISMUS) / LUKAS (BETROFFENER, HÄMOPHILIE) / NADINE (BETROFFENE, FOP) / WIEBKE (BETROFFENE, LUPUS ERYTHEMATODES) / ELVIE INGOLI (IST E.V.) / DR. MICHAEL SCHÖTTLER (ROCHE) / DR. KATHARINA SCHUBERT (MKSE) / PROF. DR. JÜRGEN SCHÄFER (ZUSE, UKGM) / PROF. DR. MARTIN HIRSCH (ADA HEALTH) / DR. MED. ANDREAS JERRENTRUP (ZUSE, UKGM) / DR. THOMAS MAYER (GKV-SPITZENVERBAND) / MALIK THOMAS (BETROFFENER, LHON) / DIRK ROSENKRANZ (DEUTSCHE MUSKELSCHWUND-HILFE) / MIRJAM MANN (ACHSE) / PATRICK LANGECKER (IPSEN) / ASTRID DOPPLER (BETROFFENE, MALIGNES MELANOM) / UWE KORST (PKD CURE) / MARK STÜRMER (NOVARTIS) / KRISTINA KEMPF (PTC) / ERIC SEITZ (PARTNERSEITZ) / FRANZISKA LICHTNACK (TAKEDA) / PAULINE LASER (PEIX) / ALEXANDER KLAUS (PARTNERSEITZ)