EURORDIS website
Alumni Meetups & Masterclasses 2024
Open Academy Masterclass - October 2024 - Negotiation skills
Watch the recording (1h30)
Speakers: Han Valk, Founder and CEO of HVFC International
Open Academy Masterclass - October 2024 - Advocacy Skills
Watch the recording (1h30)
Speakers: Han Valk, Founder and CEO of HVFC International
Open Academy Meetup - June 2024 - How to achieve regional growth & diversity in rare disease organisations
Watch the recording (1h)
Download the slides here.
Speakers: Marc Yale, GlobalSkin Board President and Tammi Shipowick, GlobalSkin Director of Programs.
Open Academy Meetup - April 2024 - Breaking down barriers to live independently with a rare disease
Watch the recording. (1h30)
Open Academy Alumni Meetup - March 2024 - Ethics and Informed Consent
Watch the recording. (1h20)
Download the slides here.
Useful resources:
- EU Clinical Trial Regulation 2004 and No 536/2014 (CTR.): https://health.ec.europa.eu/medicinal-products/clinical-trials/clinical-trials-regulation-eu-no-5362014_en#:~:text=The%20Clinical%20Trials%20Regulation%20repealed,clinical%20trials%20portal%20and%20database
- Defined in Article 4 of the General Data Protection Regulation (GDPR): https://gdpr-info.eu/art-4-gdpr/
- Assisted Decision Making (Capacity) Act 2015 > https://www.citizensinformation.ie/en/health/legal-matters-and-health/assisted-decision-making-act/#:~:text=The%20Assisted%20Decision%2DMaking%20
- Data Protection Act 2018 > https://www.legislation.gov.uk/ukpga/2018/12/contents/enacted
- National Policies i.e. HSE National Policy for Consent in Health and Social Care Research > https://hseresearch.ie/consent/
- International ethical guidelines for health-related research involving humans > https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf
- Council for International Organizations of Medical Sciences > https://cioms.ch/
- Assisted Decision Making (Capacity) Act 2022 > https://www.irishstatutebook.ie/eli/2022/act/46/enacted/en/html
- Health Research Consent Declaration Committee > https://hrcdc.ie/about-us/
Open Academy Alumni Meetup - January 2024 - Demystifying Genetic counselling: An exploration into genetic counselling for rare diseases
Watch the recording. (1h15)
Download the slides here.
Alumni Meetups & Masterclasses 2023
Open Alumni Meetup - November 2023 - How should I ask? Survey design for rare disease patient organisations
Watch the recording. (1h15)
Download Rita’s and Jessie’s (EURORDIS) slides here, Vicky’s (RDI) slides here and Raquel’s (RD-Portugal) slides here.
Open Academy Alumni Meetup - October 2023 - How to get started in research
Watch the recording. (1h30)
Download the slides here.
Useful links:
- MOOC: From Lab to Clinic: Translational Research for Rare Diseases
- Short guide on patient partnerships in rare disease research projects
Open Academy Alumni Meetup - September 2023 - Everything you need to know about the reform of the EU Pharmaceutical Legislation
Watch the recording. (1h15)
Download the slides here and here.
Download the AI generated summary here.
Open Academy Alumni Masterclass - September 2023 - Digital rights
Watch the recording. (1h12)
Other useful resources:
Open Academy Alumni Meetup - September 2023 - Introduction to N-of-1 Trials
Watch the recording. (1h20)
Download the slides here.
Useful resources:
- EU Clinical Trial Regulation 2004 and No 536/2014 (CTR.): https://health.ec.europa.eu/medicinal-products/clinical-trials/clinical-trials-regulation-eu-no-5362014_en#:~:text=The%20Clinical%20Trials%20Regulation%20repealed,clinical%20trials%20portal%20and%20database
- Defined in Article 4 of the General Data Protection Regulation (GDPR): https://gdpr-info.eu/art-4-gdpr/
- Assisted Decision Making (Capacity) Act 2015 > https://www.citizensinformation.ie/en/health/legal-matters-and-health/assisted-decision-making-act/#:~:text=The%20Assisted%20Decision%2DMaking%20
- Data Protection Act 2018 > https://www.legislation.gov.uk/ukpga/2018/12/contents/enacted
- National Policies i.e. HSE National Policy for Consent in Health and Social Care Research > https://hseresearch.ie/consent/
- International ethical guidelines for health-related research involving humans > https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf
- Council for International Organizations of Medical Sciences > https://cioms.ch/
- Assisted Decision Making (Capacity) Act 2022 > https://www.irishstatutebook.ie/eli/2022/act/46/enacted/en/html
- Health Research Consent Declaration Committee > https://hrcdc.ie/about-us/
Open Academy Alumni Masterclass - May 2023 - Introduction to Quality of Life and Patient-Reported Outcomes
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
Open Academy 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.
Other useful resources:
- Online course: Conflict of Interest in Patient Engagement
Open Aademy 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.
Interested in learning more about 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.
Alumni Meetups & Masterclasses 2022
Open Academy Alumni Meetup - December 2022 - Everything you always wanted to know about registries
Watch the recording (1h20min)
Interested in rare disease registries? Take a look at this online course!
Other useful resources:
Open Academy Alumni Meetup - September 2022 - How to establish an international group for your rare disease
Recording not available
Download the slides here and here
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