May 2025
Opportunity
The International Progressive MS Alliance is recruiting members for the Alliance’s People Affected by MS Engagement Coordination Team (ECT). This is an exciting opportunity for people living with, or people caring for someone with, progressive MS to apply their personal experience toward shaping global MS research.
Nominations are open through 20 June 2025
Background
The International Progressive MS Alliance is an unprecedented global collaboration of MS organisations, researchers, health professionals, pharmaceutical companies, foundations, donors and people affected by progressive MS– all working together to accelerate the development of life-changing treatments for people with progressive MS. Our promise is more than hope– it is progress.
The Alliance formed in 2013, uniting international scientific talent from multiple fields with the common purpose of solving progressive MS. To date, the Alliance has awarded more than €30 million to research networks and discovery projects, all with the goal of accelerating the development of new treatments, better and faster clinical trials and wellbeing strategies for people living with progressive MS. Hundreds of researchers from more than 20 countries are connected to more than 60 Alliance projects, and those numbers continue to grow.
Our momentum is accelerating due to the engagement and generous support from organizations and people all around the world. By fuelling innovation worldwide, the Alliance hopes to gain new understanding about what causes progression and, more importantly, what will stop it.
The Alliance includes all partners that have a stake in this mission, including the voice of people affected by MS. It is a core value of the Alliance to include people with diverse expertise and experience, rigorously exchanging ideas and perspectives to build trust, confidence and pride.
To this end the Alliance adopted the model of the People Affected by MS Engagement Coordination Team (ECT). The ECT concept was developed within the EU-funded MULTI-ACT project to be representative of the People affected by MS community.
People affected by MS provide key insights and help to inform the priorities of the Alliance – scientific and otherwise – by identifying what is most important to the well-being of those living with, and caring for those living with, progressive MS.
About the role
The Engagement Coordination Team is focused on three objectives:
- Providing perspective based on lived experience, representing people affected by progressive MS for Alliance work and strategies, including reviewing and evaluating research proposals
- Ensuring the implementation of the Principles of Patient Engagement in Research in all the Alliance’s work
- Enhancing visibility for the Alliance’s work, instilling hope in those affected by progressive MS
Position Responsibilities:
- Participate in quarterly teleconferences; more if assigned to specific work teams or committees*
- Please note that, depending on where you live, these meetings may take place either early in the morning or late at night to accommodate our international membership
- As possible, attend two multi-day, in-person meetings each year. This is likely to include international travel: 2-3 days each meeting, with 2-3 added travel days to accommodate personal needs and energy requirements*
- Travel costs and organizational support will be provided by the Alliance, and all meeting venues and accommodations will be fully accessible for people living with disabilities.
- If you have MS, you may be accompanied by a support partner or hire nursing support as you deem necessary.
- Represent the perspectives of all people affected by progressive MS during strategy discussions, scientific meetings and other events organized by the Alliance
- Read, review and evaluate relevant documents and contribute to discussion on the direction of the work of the Alliance
- Participate and engage in other Alliance work teams and committees as requested
*It is understandable that there may be occasions when you are unable to attend a meeting or teleconference due to ill health or other personal reasons. We ask that you communicate any conflicts or concerns in as timely a manner as possible.
Additional Requirements:
- Either live with progressive MS or care for someone living with progressive MS
- Ability to participate in English (spoken and written) is preferred, as this is the working language of the Alliance and international scientific meetings. We also offer translation services that may support your written and spoken needs.
- Participate in communications coaching and preparation
Preferred Skills and Qualities:
- Willingness to think broadly about MS and consider the questions and priorities that are most important to the diverse range of people affected by MS
- Understanding of the impact of progressive MS on people’s everyday lives
- High-level understanding of the research process and eagerness to understand how research can impact the lives of people affected by MS
- Ability to review research proposals in plain language and score them using criteria that align with Alliance priorities
- Comfortable participating in discussions and speaking to groups as needed
- Confidence to articulate your perspective and to actively participate in discussions with health professionals and scientists
- Ability to listen, understand and respect differing opinions
- Experience taking an active role in decision-making in panel or committee meetings (including teleconferences)
- Basic proficiency in the technology used for conducting business, including email, Word, Dropbox, and teleconferencing tools such as Zoom and Microsoft Teams
- Basic understanding of the science behind MS and the confidence to ask for clarification if necessary
- Accepting of the use of animals in research, where necessary
Training and Support:
- Members will be provided with orientation on the background, aims, objectives and ongoing work of the Progressive MS Alliance
- Ongoing support will be available by email and teleconference before and after meetings by the Alliance Staff
- Any necessary supporting documentation will be provided to you in an accessible format in advance
- As stated above, all meeting venues and accommodation (if required) will be accessible, and your expenses will be reimbursed for attending meetings.
Time Commitment:
This role serves a two-year term, which is renewable up to one time (for a maximum four-year term), if membership requirements are met.
On average, this position requires 5 hours of dedicated time each week.
To apply:
- Please read the above position description carefully to understand the required skills and qualities, the expected responsibilities and time commitment, as well as the support the Alliance will provide.
- Read more about the work of the Progressive MS Alliance.
- Please complete the online application form or download and return a completed form via email to Jill Petersen by 20 June 2025.
- If you have any questions about this role, please contact Jill Petersen.
- Shortlisted applicants will be invited for an interview via teleconference in July 2025.
Nominations are open through 20 June 2025