Amplifying Our Collective Voice: IMP at National and International Events

As members of IMP, we are part of a global alliance of patient organisations, each one a vital thread in a much larger tapestry. When one of us speaks at a national or international event, we do so not only on behalf of our own communities, but as representatives of a broader, united voice. This dual role adds real value to our national organisations, strengthening our visibility, credibility, and influence across borders.

IMP Board Member Kristen Clifford with the participants of the 2025 International Mitochondrial Conference and the First International Forum on Rare Diseases in Children in Shanghai this November

Wearing Multiple Hats

These engagements are more than speaking opportunities, they are moments of connection, influence, and visibility. Kira Mann said of attending the annual MDA meeting “As an active member organisation of IIMP, our participation carries dual importance. We wear multiple hats, sharing insights from U.S. patients and advocates while bringing back global perspectives that inform IMP’s collective mission. These international meetings allow us to align on priorities, amplify the patient voice worldwide, and ensure that both MitoAction and IMP continue driving meaningful progress for everyone impacted by mitochondrial disease.”

Bringing the patient perspective

Board member Elja van der Veer says “it is clear that a lot is happening and that there is hope for the future. It is so good to know that there are researchers all over the world dedicated to finding cures or better care paths for mitochondrial patients. Not all researchers meet mito patients in their work and the meetings have this added value too, which in the end will benefit research results. The patient’s perspective is so important!”

They remind us that our strength lies not only in our individual efforts, but in our shared commitment to amplifying the voices of those affected by mitochondrial diseases worldwide.

To give you a sense of our reach, our board members represent both IMP and their mito organisations at a series of high-profile events:

March 17 – Dallas, USA Kira Mann, board member of IMP and CEO of MitoAction, attended the MDA Clinical & Scientific Conference, with global leaders in scientific research and clinical care to advance treatments for the neuromuscular disease community. With over 2,500 attendees in-person and online, the conference brought together experts, industry leaders, and patient advocates from 41 countries to discuss cutting-edge developments.
April 10 – Italian Senate, Italy At the event “Politics and Disability – A Crucial Combination for Disability in Italy”, our Chair Paula Morandi addressed policymakers, highlighting the role of patient organisations in shaping inclusive policy.
October 4 – XV Municipality Health Day, Italy Speaking at a health-focused event centred on women and children, Paula raised awareness of mitochondrial diseases and underscored the importance of patient-led advocacy through IMP and Mitocon.
October 6–7 – LHON Advisory Board, Turkey Organised by Chiesi Rare Diseases, this international meeting brought together experts and advocates. Paula opened the event on behalf of IMP and delivered a presentation on our current projects, with a focus on LHON.
November 8 – AIMO/SISo Congress, Italy At this ophthalmology congress held at La Nuvola, Paula presented on the evolving role of patient organisations, spotlighting the work of IMP and Mitocon in rare disease advocacy.
November 21–23 in Shanghai. IMP board member Kristen Clifford presented at the International Mitochondrial Conference and the First International Forum on Rare Diseases in Children.
November 24-26 in Brasília, Brazil. VI Ibero-American Congress on Rare Diseases. IMP member Mitocon Brazil organised and conducted one of the event’s panels entitled: “The Era of Advanced Therapies – Gene, Cellular and New Molecules for Rare Diseases”.
November 28–30 – MELAS Consortium, Italy Paula represented IMP at this important gathering, further strengthening our ties with the scientific community and reinforcing the patient voice in research and collaboration.
December 11, Complex and Rare Epilepsies was attended by IMP board member Emma del Rey. The agenda covered updates from initiatives like the Patient Transition Charter and caregiver mental health integration, all framed around building a stronger, pan-European alliance. Find out more about the E+ initiative
December 16, Patient Board Meeting for MetabERN (virtual meeting). IMP is proud to be joining the European Reference Network for Hereditary Metabolic Disorders (MetabERN). Paula Morandi represented the international mito community on 16 December and going forward, former board member, Katie Waller will represent IMP alongside the Lily Foundation.