Rare Cancers Europe & JARC at the EU Medicines Agency today discussing the role #ERNs have to play in licensing process of new #rarecancer agents EURORDIS-Rare Diseases Europe, ACCRF, SIOPE 🎗️, ECPC, EURACAN, Paolo G Casali, IBTA ESMO - Eur. Oncology

2nd #ESORareCancers now ending. Done by ESO & ESMO in collaboration with EURACAN & JARC. All 10 families of rare adult solid cancers discussed on a multidisciplinary basis. A patient advocates’ course held in parallel. Let’s think together then how to shape 3rd edition in 2018.

This weekend our trustee Tori Bassett was in Milan at #ESORareCancers Rare Cancers Europe to talk about patient advocacy GIST Cancer UK - formerly GIST Support UK and PAWSGIST

ESMO - Eur. Oncology Magnitude of Clinical Scale Munich Workshop Science for Advocates #patientsinvolved

Greetings from Munich! E de Vries talking about ESMO Magnitude of Clinical Benefit Scale - Science for #PatientAdvocates workshop

The ESMO Science for #PatientAdvocates workshop kicking off in Munich, 'Why advocates should care about science' Bettina Ryll

The ESMO Open staff wishes you all the most happy holiday season and all the best for 2017! @M_Preusser Christoph Zielinski

Late stage diagnosis one of several contributors to global #cancercare disparities R Stahel ESMO - Eur. Oncology

ESMO - Eur. Oncology workshop #cancerpatient networks driving research today & tomorrow #Brussels ECPC

#Cancer Pat Advocacy Netwks WS: Bettina Ryll welcomes patients keen to drive clinical res bit.ly/23Pg4FE

24/3 MEP Alojz Peterle, Rare Cancers Europe & ESMO event: European Reference Networks #rareCSM ESMO - Eur. Oncology Lojze Peterle bit.ly/1E8g5ah

Removing Eve’s rare cancer drug also removes hope of finding a cure. #100000voices needed: bit.ly/100000voices

#RareDisease Patient Advocates: Follow These 25 Twitter Accounts | Thank you EURORDIS-Rare Diseases Europe RareConnect #FF :-) moderators.rareconnect.org/social-media-c…

Our paper on methodological recommendations for clinical studies in #rarecancers now published in Annals of Oncology ow.ly/CeL9I

RT Rare Cancers Europe: A call for new methodologies to be applied to #clinicaltrials in #rarecancers bit.ly/1pry4iD

1 in 5 cancers are #rarecancers #esmo2014 addresses implications for regulatory agenda, clinical decision-making

In a nutshell, methodological challenges: few patients, low level of data, standard of care unclear J Bogaerts #rarecancers

A call for new methodologies to be applied to #clinicaltrials in #rarecancers bit.ly/1pry4iD

ESMO and patient orgs agree on joint policy action to ensure patient access for future conf #ESMO14 #advocatesIN

Growing partnership between patients and research Jan Geissler ESMO - Eur. Oncology ESOncology #ESMO14