Name of the organisation
Language of the training
Geographical scope
Training delivery

EHC logo

European Haemophilia Consortium

The EHC aims to ensure access to education for patients and patient organisations to engage in health technology assessment (HTA). We invite all patients with rare bleeding disorders to enrol in this course. The programme may also act as a quick reference guide for students, researchers, and HTA agencies to begin to understand the issues related to bleeding disorders and how to evaluate them.

Training Overview

 The training allows participants:
  • Learn how to analyse various treatments and assess their value.
  • Understand how HTA bodies assess treatments and ways to impact this evaluation.
  • Help their government in ensuring treatment access for patients with bleeding disorders.
  • Explore ways to balance innovative treatments with budget limitations.

The programme has the following modules:

  • Module 1 – Introduction to Health Economics
  • Module 2 – Health Technology Assessment – Understanding Outcomes
  • Module 3 – HTA in Bleeding Disorders – Applied Cost-Effectiveness Analysis and Budgetary Impact
  • Module 4 – Payment Models
Participants can easily navigate the modules on the online platform and learn at their own pace. In each module, they find short pre-recorded videos with subtitles, covering the main concepts of health economics in bleeding disorders and some questions to review understanding. Some complementary materials are also added to widen concepts and knowledge.
 
 
After applying, successful applicants are informed by email on a rolling basis. The course is held every year in September and October.
 Visit Training Website
Delivery Online training
Language English
Targeted At:
Patients and patients representatives
Caregivers
Academic/Researcher representatives
Industry representatives
Healthcare professional
Regulatory agency representative

Training for different stakeholders

N/A

Geographical Scope:

Applicants from the WHO European region are welcome to register. Applicants from other regions may be accepted, too.

Cost of the training:
The participation has no cost
Clinical Focus:

The focus of the training is in Congenital, Hereditary, and Neonatal Diseases and Abnormalities

SMa logo

SMA Europe

SMAcademy is a SMA Europe capacity building initiative for patient advocates in SMA that provides patient advocates with tools to amplify their efficacy and impact when advocating for a better life for people living with SMA. Co-create. Peer exchange. Expert opinion.
 
Patient advocates need knowledge across areas of expertise, from understanding SMA to medicine development, regulatory processes, policy, and access. They also need a vast skillset to bring people together, lobby with key stakeholders, and increase the impact of their organisations. At the same time, patient advocates also have a wealth of hands-on and first-hand experience advocating and living with SMA that makes them invaluable experts in the field.
 
Through a variety of learning opportunities, SMAcademy provides a global platform for patient advocates to: Learn Together. Teach each other.

Training Overview

SMA Patient Advocate Training is a unique, SMA-focused training designed to provide patient advocates with essential knowledge and skills to represent people living with Spinal Muscular Atrophy (SMA).

This learning programme equips SMA patient advocates from all around the globe with the foundational tools they need to act as informed partners in patient engagement collaborations with a wide range of stakeholders, from industry to clinicians, governments and beyond. The SMA Patient Advocates Training is structured in five learning units that cover a comprehensive overview of SMA, patient advocacy principles, the medicines lifecycle, healthcare systems and access pathways, and key challenges in the SMA landscape.

  • Module 1: Introduction to Patient Advocacy in SMA
  • Module 2: What is SMA?
  • Module 3: The lifecycle of medicines
  • Module 4: Healthcare and access
  • Module 5: Critical issues in SMA
The first four modules are online and self-paced. Once these are completed, trainees are admitted to Module 5, which happens in person (location and dates change every year). Upon completion of all dedicated modules, trainees receive the SMA Patient Advocate Training Certificate issued by SMA Europe, as proof of their expertise.
 
The training is estimated to take approximately 50 hours to complete and must be completed over the course of 6 months.
In 2026, applications will close on 30 June and the training will start in September. The training is both in person and online For more information: https://www.sma-europe.eu/sma-patient-advocate-training
 
The SMAcademy Webinar Series hosts regular online webinars and workshops for patient advocates in SMA. The webinars are available on our website and can be screened after the live session. Participation is free of charge. For more information: https://www.sma-europe.eu/sm-academy-learning-opportunities-and-webinars
 
The Global SMAdvocacy Event is a flagship SMAcademy initiative by SMA Europe designed to strengthen connections and build synergies in the global community of SMA patient advocates. SMA organisations from around the world convene to discuss urgent issues in SMA advocacy, sharing hands-on experience and strategy, to learn from each other and build a better world for people living with SMA. This is an in person meeting. For more information: https://www.sma-europe.eu/global-sm-advocacy-event-2026
 Visit Training Website
Delivery Blended training (online and in-person)
Language English
Targeted At:
Patient Advocates
Caregivers

Training for different stakeholders

N/A

Geographical Scope:

This is a global training

Cost of the training:
SMAcademy programmes and initiatives are free of charge. Travel and accommodation expenses to attend in-person events are covered by participants. A limited number of opportunities for financial help may be offered depending on availability
Clinical Focus:

Spinal muscular atrophy

EURORDIS logo

EURORDIS - Rare Diseases Europe

Open Academy x ERDERA Schools
 
The Open Academy, EURORDIS’ capacity-building programme for rare disease advocates and young researchers, offers three specialised training opportunities with the support of ERDERA. Delivered in Barcelona through a hybrid learning format, these programmes combine online pre-training with in-person training to strengthen participants' knowledge and engagement in rare disease research and policy.
 

Training Overview

The School on Medicines Research & Development and the School on Scientific Innovation & Translational Research each include four days of face-to-face training, while the Training on Data, Ethics and AI concludes with two days of in-person sessions.
 
Together, these programmes equip rare disease patient advocates and early-career researchers with the skills and knowledge needed to contribute as informed and equal partners across the rare disease ecosystem.
 
Applications for the School on Medicines Research & Development and the School on Scientific Innovation & Translational Research always open in September. Applications for the Training on Data, Ethics and AI always open in January.
 
 
 Visit Training Website
Delivery In person training
Language English
Targeted At:
Patients and patients representatives
Patient Advocates
Caregivers
Academic/Researcher representatives

Training for different stakeholders

N/A

Geographical Scope:

Europe 

Cost of the training:
ERDERA covers the cost of the training course for all participants (80 places available, 40 for each school), three nights’ accommodation (for the rare disease advocates and designated carer), meals during training hours. Fellowships are also available for participants from underrepresented countries.
Clinical Focus:

Rare diseases

EUPATI sweden logo

EUPATI Sweden

EUPATI Sweden's on-line training platform is open and free-of-charge. Courses include introduction to medicines R&D, medtech, regulatory affairs, HTA, patient involvement and more.

Training Overview

EUPATI Sweden's on-line training platform is open and free-of-charge. Courses include introduction to medicines R&D, medtech, regulatory affairs, HTA, patient involvement and more.

 Visit Training Website
Delivery Online training
Language Swedish
Targeted At:
Patients and patients representatives
Academic/Researcher representatives

Training for different stakeholders

EUPATI Sweden has also a training for researchers on patient involvement. It is an in-person training and designed to be delivered to research teams looking to involve patients in their research.

Geographical Scope:

Sweden

Cost of the training:
EUPATI Sweden's on-line training platform is open and free-of-charge
Clinical Focus:

The training is non-disease specific 

World Duchenne Organization

The Academy provides online training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates.

Training Overview

Over the course of 2 days, Duchenne Patient Academy attendees will listen to speakers and attend panel discussions moderated by experts in their respective fields. As with last year, attendees have the opportunity to become involved in the dialogue and share their experiences.

Some of the topics covered during the training are Medicines R&D, Policy, SoC, Capacity Building, Fundraising for POs and other

 Visit Training Website
Delivery Blended training (online and in-person)
Language English
Targeted At:
Patients and patients representatives

Training for different stakeholders

Geographical Scope:

This is a global training

Cost of the training:
-
Clinical Focus:

The training is focused on Duchenne and Becker muscular dystrophy (DMD/BMD)

INVOLV

The goal of INVOLV is to professionalize patient representatives and patient organizations to make them more capable to get involved in improving healthcare, welfare and scientific research.

Training Overview

The EUPATI-NL training is for patient representatives in the field of medicine research. It contains general trainings about participation in scientific research (1day) or about assessing research proposals as a patient representative (2 days).

 Visit Training Website
Delivery Blended training (online and in-person)
Language Dutch
Targeted At:
Patients and patients representatives
Academic/Researcher representatives
Healthcare professional
Regulatory agency representative

Training for different stakeholders

INVOLV provides trainings for both patient representatives / organizations as well as researcher / research groups, and funding agencies.

Geographical Scope:

The training is based in The Netherlands

Cost of the training:
The costs are free for patient representatives coming from a specific patient organisations as our services are free (funded by government) for patient organisations.
Clinical Focus:

The training is non-disease specific 

Greek Patient's Association

The Greek Patients' Association is creating a cluster of multifaceted educational programmes aiming to empower the community and create patient experts. This cluster is called Patients' Academy and it includes the EUPATI Academy and the Digital Academy. The EUPATI Academy will be an adaptation of the EUPATI Patient Expert Training Programme in greek and the Digital Academy is a short term (2,5 month) training on digital health.

Training Overview

The Patient Academy with all its trainings will be held on a dedicated LMS platform. The Digital Academy will last from October to December 2025 following a hybrid model. This training is free of charge and it is open for Greek Patients' Association members and other patient associations in Greece. Some of the key topics of this training are the following: 

  • Use of digital health applications such as the myHealth app and electronic prescriptions
  • The role of AI in healthcare
  • Legal and ethical considerations in the use of health data
  • Mobile and web technologies for self-management of disease
  • The rights of healthcare service recipients in the new digital environment

EUPATI Academy is an adaptation of the original EUPATI. Open to Members of the Greek Patients’ Association, registered members of the Members Associations, other patient representatives and carers, pharmaceutical industry and academics, interested in Medicines R&D and patient engagement. Registration on the EUPATI Greece website, requires submitting a CV, motivation letter and a letter of recommendation from the organisation each individual is registered to. 50 participants per cohort.

  • 12 months of training
  • 270 hours of online learning
  • Two 3 day training events (one online, one in person)

Getting started 
Introduction to Medicines R&D 
Non-Clinical Development 
Clinical Development 
Regulatory Affairs 
Health Technology Assessment (HTA)
Medical Devices
Digital Health

 Visit Training Website
Delivery Blended training (online and in-person)
Language Greek
Targeted At:
Patients and patients representatives
Academic/Researcher representatives
Industry representatives
Healthcare professional

Training for different stakeholders

Digital Academy (pilot run 2025) is solely for patients, patient representatives and carers.
The EUPATI Academy will be available to industry and academy representatives as well

Geographical Scope:

The training is focused on the Greek national context

Cost of the training:
Free of charge for GPA Members and their members €150 reduced fee for patient representatives of other organisations € 500 for the pharmaceutical industry and academics Accommodation and tickets are included
Clinical Focus:

The training is non-disease specific

IPPOSI logo

IPPOSI

Patient Capacity Building Training aims to build the capacity, confidence, and leadership skills of patient advocates in Ireland by providing access to inclusive training materials, expert advice, and a repository of resources.

Training Overview

The topics covered are chosen based on a survey of patient/carer members, most online and all free

For example for 2025 the following areas have been covered:

EU HTA Regulation webinar; The use of AI in Healthcare in Ireland, the Citizen Jury verdict; PPI toolkit – landscape, making a start, examples of best practice; Creating a PPI (Patient and Public Involvement) CV using Canva; Understanding and Influencing the Oireachtas; Critical Reading; Clinical Trials Information System (CTIS) Public Portal

 Visit Training Website
Delivery Online training
Language English
Targeted At:
Patients and patients representatives
Caregivers

Training for different stakeholders

N/A

Geographical Scope:

The training is focused on the national context of Ireland

Cost of the training:
The training is free for patients
Clinical Focus:

The training is non-disease specific 

 

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