A note from the Chair: One Voice, 25 Nations — The Power of Our Global Umbrella

28 Aug, 2026

Paula Morandi, Chair of IMP

When you hear the acronym IMP, what comes to mind?

To many, International Mito Patients (IMP) is a global network, a friendly point of contact, or an organiser of international meetings. But at its core, IMP is something far more vital: we are the central umbrella organisation uniting 25 mitochondrial disease patient organisations from every corner of the globe.

Photo of a group of about 27 people crouching or sitting for a group photo. Most are wearing light brown t-shirts and lanyards. We can see a table with a IMP branded tablecloth to the left of the picture.

Understanding what an “umbrella organisation” truly means—and why that structure is vital—is key to unlocking the full potential of our global community, especially when it comes to medical research and international advocacy.

The Power of 25: Stronger Together

Mitochondrial disease does not care about borders, languages, or time zones. Because it encompasses a rare and complex spectrum of conditions, individual national patient groups often fight uphill battles to get noticed by international researchers, pharmaceutical companies, and policy makers.

That is precisely why IMP exists. As an umbrella entity, IMP acts as a single, unified gateway. We bring together 25 distinct member organisations under one shared mission: to ensure that the voice of the mitochondrial community is heard clearly, loudly, and consistently wherever decisions about our future are being made. This is why IMP has created World Mitochondrial Disease Week.

What Happens When IMP Joins a Research Project?

When IMP is invited to participate in a scientific committee, assist in the development of a clinical trial, or a global research consortium, we do not sit at the table as a single entity. We represent all 25 member organisations—and every single patient behind them.

This distinction is crucial for both scientists and our own community members to understand:

– For Researchers: Partnering with IMP does not give you access to a single local cohort; it connects you directly to a global, collective intelligence representing thousands of affected families worldwide.
– For Member Organisations: When IMP has a seat at the table, you have a seat at the table. IMP acts as an amplifier, ensuring that global research projects account for the diverse realities of patients across all 25 represented nations.

The Difference Between IMP and Individual Member Engagement

It is not uncommon—and indeed very welcome—for individual IMP member organisations to be invited directly to participate in scientific projects. However, there is a clear distinction in representation:

When an individual member organisation joins a project, they represent their specific national or regional constituency.
When IMP joins a project, it represents the entire global network of 25 organisations.

Both forms of participation are valuable, but they serve different purposes. Individual groups bring vital local insights, while IMP brings the full weight and diversity of the entire global patient population.

Elevating the Invisible: Visibility for All

Perhaps the greatest strength of the IMP umbrella is equity.

In the world of rare disease research, larger or more well-funded national organisations naturally draw more attention and resources. Smaller organisations, or those in developing regions, are too often left behind in the shadows, lacking the visibility or bandwidth to engage directly with global scientific bodies.

When IMP represents all 25 member organisations in high-level research, it brings maximum visibility and value to every single member—especially the smallest ones.

By standing under the IMP umbrella, a small patient group with modest resources carries the exact same weight in global research conversations as the largest organisation in the network. IMP ensures that no patient group is overlooked, no matter where they are located or how small their team may be.

A Message to Scientists and Our Community

To our scientific and industry partners: when you collaborate with IMP, you are engaging a unified global community. You gain the breadth, insight, and backing of 25 patient organisations committed to advancing research together.

To our member organisations: IMP is your platform. It exists to serve you, protect your interests, and elevate your presence on the world stage.

We are not 25 isolated voices trying to be heard over the noise. Together, as International Mito Patients, we are one global voice—uncompromising, inclusive, and impossible to ignore.