EURORDIS website
Protected: Open Academy Alumni Resources
Register Now for the Future Alumni Meetups & Masterclasses
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EURORDIS Alumni Meetup - September 2023 - Introduction to N-of-1 Trials
22 September 2023
Register NOW!
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EURORDIS Alumni Meetup - September 2023 - Everything you need to know about the new EU Orphan Drug Legislation
28 September 2023
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EURORDIS Alumni Meetup - October 2023 - How to get started in research
19 October 2023
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Alumni Meetups & Masterclasses
- EURORDIS Alumni Masterclass - September 2023 - Digital rights
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EURORDIS Alumni Masterclass - May 2023 - Introduction to Quality of Life and Patient-Reported Outcomes
Meet the speakers:
Other useful resources:
- EORTC PROs Library: https://itemlibrary.eortc.org
- FDA Guidelines: https://www.fda.gov/drugs/development-approval-process-drugs/fda-patient-focused-drug-development-guidance-series-enhancing-incorporation-patients-voice-medical
- EMA Guidelines: https://www.ema.europa.eu/en/documents/scientific-guideline/reflection-paper-regulatory-guidance-use-health-related-quality-life-hrql-measures-evaluation_en.pdf
- FDA guideline in Duchenne: https://www.fda.gov/regulatory-information/search-fda-guidance-documents/duchenne-muscular-dystrophy-and-related-dystrophinopathies-developing-drugs-treatment-guidance
- Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM: https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13277
- FDA published a final guidance document on ‘Principles for Selecting, Developing, Modifying, and Adapting Patient-Reported Outcome Instruments for Use in Medical Device Evaluation ‘. https://www.fda.gov/regulatory-information/search-fda-guidance-documents/principles-selecting-developing-modifying-and-adapting-patient-reported-outcome-instruments-use
- ERICA repository of PROs: https://erica-rd.eu/work-packages/patient-centred-research/proms-repository/
- Database referencing validated and published Clinical Outcome Assessments (COAs): https://eprovide.mapi-trust.org/advanced-search?database=proqolid
- Peer-learning pills: Development of patient reported outcome measures (PROMs) (2022): https://youtu.be/-mNbcgyxgQ8
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EURORDIS Alumni Meetup - April 2023 - Importance of a scientific and medical committee or council in a patient organization and how to set it up
Watch the recording. 1h14m
Download the slides here.
Download a summary of the Meetup here.
Meet the speakers:
Other useful resources:
- Online course: Conflict of Interest in Patient Engagement
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EURORDIS Alumni Meetup - February 2023 - How to apply to a call for research projects with a grant at the European level?
Watch the recording. 1h30m
Download the slides here and here.
Download the list of questions and answers shared during the Meetup.
Meet the speakers:
Interested in learning more about EJP RD and the rare disease research landscape? Take a look at this online course!
Other useful resources:
- Portal of the European Commission to find partners.
- The EJP RD’s Resource Finder provides scientific partners with a vast
number of existing research data and services grouped into categories
and represented as 11 `nodes´ in the mindmap. - European Commission: Funding & tenders opportunities.
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EURORDIS Alumni Meetup - December 2022 - Everything you always wanted to know about registries
Watch the recording (1h20min)
Meet the speakers:
Interested in rare disease registries? Take a look at this online course!
Other useful resources:
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EURORDIS Alumni Meetup - September 2022 - How to establish an international group for your rare disease
Recording not available
Download the slides here and here
Meet the speakers:
Interested in this topic? Take the ‘Establishing an international cooperation‘ online course.
Digital badges for the Open Academy Alumni
If you have completed any of the Open Academy Schools, you should have recently received in your inbox a digital badge acknowledging your achievement(s). These badges are a testament to your hard work and we encourage you to showcase them proudly. Share on social media and add them to your LinkedIn profile under licenses and accreditations. Let the world know that you are a proud Open Academy Alumni!
Haven’t received the email with your badge? Send an email to marta.campabadal@eurordis.org
How can we help you?
Marta Campabadal - Open Academy eLearning and Outreach Coordinator
marta.campabadal@eurordis.org