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!
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
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)