EURORDIS website
Launched as a pilot in 2025, the ERDERA Mentorship Programme aims to provide leadership development and capacity-building opportunities for rare disease patient advocates. Through virtual mentorship and a series of masterclasses, we seek to empower advocates with the necessary skills, knowledge, and support to enhance their effectiveness in advocacy, organisational leadership, and engagement with stakeholders.
The programme is composed of two complementary components: a series of three virtual Masterclasses and the group mentoring sessions. These will run in parallel from November 2025 to March 2026. The Masterclasses will provide expert-led training on key topics relevant to all participants, helping to build a shared foundation of knowledge. At the same time, the group mentoring sessions will offer a more personalised and practical space to apply that learning, explore specific challenges, and receive tailored guidance from an experienced mentor. This parallel structure ensures that participants benefit from both broad thematic learning and focused, small-group support.
The main objective of this programme is to build capacity in specific topics:
- Community Advisory Boards
- Mental Health & Rare Disease Organisations
- Patient Partnership in Clinical Networks
- Accreditation programme for care centres of excellence
Each group is composed of 1 mentor and 4-5 mentees, what is called a group mentoring model.
30 patient advocates and young researchers will be accepted into this advanced training. 20 of those will be part of the mentoring programme.
How does the programme work?
- Open Academy Alumni (rare disease advocates who have completed any of the Open Academy Schools) are invited to apply to join the programme. Selection criteria are based on needs, level of development, potential for growth and a basic level in English is required.
- All applicants must complete an application form specifying the group they are interested in joining, and what steps have been taken to make progress on this topic.
- Selected participants will be notified in October and they will be matched with the mentor and introduced to the rest of their peers.
- A private website will be made available with information, terms and conditions, resources, templates, to help prepare mentors and mentees before the start of the programme.
- EURORDIS will organise an orientation call for mentees in November to reflect on what you want to get out of the programme and set appropriate expectations.
- EURORDIS will coordinate monthly virtual meetings for all groups to share information, signpost to useful resources, inform the group and the mentor on the progress, collaborate and showcase opportunities.
- At the end of the programme, EURORDIS will conduct an evaluation of the programme to apply the lessons learned to the next edition.
Benefits from the mentoring programme
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Your mentor will provide guidance, share their knowledge, and help you navigate challenges - You will gain more confidence in engaging with other stakeholders in their own setting
- You will be able to share experience and knowledge with peers and learn from their experiences
- You will be part of a safe, structured space that encourages learning and the exchange of information, knowledge, and ideas
Mentoring
Programme
Details
Duration: 4 months from December 2025 to March 2026
Structure: Group mentoring model – 1 mentor per 4-5 mentees
Commitment: 1 hour per month virtually
Cost: Free for the Open Academy Alumni
Format: Mentors and mentees are paired to facilitate skill development, strategic problem-solving, and leadership advancement. Meetings, conducted virtually, will be organised by EURORDIS.
Ready to join the mentoring programme? Here’s how to apply:
Choose the topic that speaks to you the most — or even a couple of them. You can apply to more than one, but you’ll only be selected for one group. Click APPLY NOW to access the form for your chosen topic. Each form is tailored to that specific area, so be sure to provide all the requested details. The more we know, the better we can connect you with the right group.
The mentoring group on Community Advisory Boards (CABs) will equip rare disease advocates with the skills to effectively participate in board discussions, influence decision-making, and advocate for patient needs. Participants will learn how to navigate CAB dynamics, develop strategic communication skills, and drive patient-focused initiatives.
Explore ways to foster open, supportive conversations about mental health within rare disease communities. Learn how to create safe spaces, reduce stigma, and integrate mental wellbeing into your organisation's mission.
Gain insight into the Duchenne Centers Accreditation Program. Learn about the criteria, processes, and training involved in establishing and supporting care centres that meet global standards for Duchenne care.
Discover how to build meaningful, equal partnerships with healthcare professionals. Learn how patient voices can influence clinical network decisions, ensuring care and research truly reflect lived experience.
FAQs about the Open Academy Mentoring Programme
Who can apply to join the mentoring programme?
We welcome our Alumni who represent patient groups of all sizes and stages of development. Whether you’re just starting out or more established, you’re encouraged to apply. The most important thing is that you’re motivated and have a clear idea of what you’d like to achieve.
Sessions will be conducted in English. While fluency is not required, participants should feel comfortable communicating in group discussions.
What’s the expected time commitment?
This is a mentee-driven programme, which means you will be responsible for preparing each meeting. There will be templates to help you prepare.
Mentees are expected to attend all mentoring sessions, participate actively, and complete a short reflection or progress summary at the end of the programme.
Both mentees and mentors should be available to:
- Have at least one hour-long meeting each month
- Join a check-in call (20–30 minutes each) with EURORDIS team over the course of the programme
- Attend both the programme kick-off and closing events
- Review recordings if unable to attend live
How are mentoring groups decided?
Pairings are made based on the information provided in your application—specifically your topics of interest, goals, preferences, and areas of expertise or need.
Who are the mentors?
Experienced advocates with a robust professional and leadership track record.
Includes (profiles):
What important dates should I be aware of?
- Call for applications: September – October 2025
- Inform participants: October 2025
- Start advanced training (Masterclasses + orientation session): November 2025
- Mentoring kicks off: December 2025
- End mentoring: March 2026
Can more than one person from the same organisation participate?
Typically, we ask that only one individual represents each patient group. This person should stay involved for the full duration of the programme.
Can I withdraw from the mentoring programme once it has started?
We ask you to communicate your withdrawal from the programme as soon as possible so another person can take your spot.
What's the cost to participate in this programme?
Participation in the mentoring programme is free of cost for the Alumni.
Make sure you’re fully informed before applying — check the Terms and Conditions for complete details on the mentoring programme.
The Open Academy Mentoring Programme has been developed in collaboration with:
ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595. Views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the European Union or any other granting authority, who cannot be held responsible for them.