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Rare Diseases International (RDI) is leading the Global Action Plan on Rare Disease, bringing together stakeholders from around the globe to collaborate and activate this ambitious plan. RDI CEO, Alexandra Huember Perry gives us an update on where we are today.
January 2026
Alexandra Heumber Perry
CEO
Rare Diseases International
Christy: Alex, thank you for joining us. To start, could you tell us about Rare Diseases International and its core mission?
Alexandra: Hello, I'm Alexandra Heumber-Perry, the CEO of Rare Diseases International (RDI). We are the global alliance of persons living with rare diseases, representing over 120 patient organizations active in more than 150 countries. Our mission is to be the voice for the 300 million people living with a rare disease globally.
We do this through 3 strategic pillars.
- First, we empower our members to advocate for their rights and for better access to diagnosis, treatment, and care
- Second, we shape global policy, influencing the ecosystem to ensure the right frameworks are in place
- Third, we partner with various organizations on concrete projects to improve access and share knowledge, such as educating health practitioners or building a global network for rare diseases
Christy: RDI recently had a monumental success at the World Health Assembly in May 2025. Can you explain what the new resolution on rare diseases is and why it's so significant?
Alexandra: We actively contributed to the adoption of a resolution on rare diseases at the 2025 World Health Assembly, which was initiated by Egypt and Spain and co-sponsored by 39 member states. This resolution calls on all WHO member states to prioritize rare diseases within their public health agendas. Crucially, it also calls on the WHO to develop a global action plan on rare diseases.
This is the first time anything like this has happened at the WHO; there was no strategy before. It's a true recognition of the importance of rare diseases: the conditions themselves, and the rights of people living with them. For the first time, member states have collectively agreed to recognize rare disease as a global public health priority. The WHA Resolution and Global Action Plan represent a turning point for Persons Living with Rare Diseases (PLWRD)– one that says clearly and collectively: You matter. Your health matters. Your voice matters.
Christy: A resolution is a major step, but implementation is key. What does this resolution actually ask member states to do, and how will the new Global Action Plan create accountability?
Alexandra: The resolution has two parts: The first includes clear actions member states can take now, like developing national plans, investing in registries, and collecting data
The second, and most critical part, is asking the WHO to develop the Global Action Plan. This plan will be very concrete, with clear objectives, indicators, and targets. This is what creates accountability.
While national plans are recommendations, the Global Action Plan provides a framework that countries will have to report on. They will need to come back every 2 years with a progress report. This provides a reference for countries to assess if they are on the right track and creates a mechanism to ensure the resolution is translated into real action.
Christy: How is RDI ensuring the Global Action Plan isn't just a "top-down" directive and actually reflects the needs of patients on the ground?
Alexandra: This is a key priority. We want this plan to be built from the bottom up, and so RDI is facilitating a Coalition we refer to as CARE [Coalition for Advocacy in Rare Disease Equity]—this is a group of more than 300 stakeholders including patient organizations, hospitals, and researchers that advocated for the resolution—to support its implementation.
To ensure this bottom-up approach, we are establishing regional task forces. These multi-stakeholder groups have two functions. First, they will advocate for and inform the development of the Global Action Plan, ensuring regional considerations are included and that civil society is consulted. Second, they will build capacity at the regional and country level to prepare for the implementation of the plan once it's adopted, which we expect in 2028. Without this groundwork, implementation won't happen.
Christy: It sounds like a massive undertaking. Since the resolution passed, do you feel optimistic? Are you seeing real momentum building?
Alexandra: I feel very optimistic. The dynamic it has created is incredible. I've been positively surprised to see the resolution's impact spreading. At recent scientific conferences, I've observed researchers and academics referencing the resolution in their presentations. This is a great signal. It shows the resolution is being understood beyond just policymakers and advocates, and it's bridging the gap between policy and science.
Christy: What do you see as the biggest remaining challenge, and how is RDI preparing to tackle it?
Alexandra: At the end of the day, we know the biggest issue will be the allocation of budgets for rare diseases. We can push for priorities like newborn screening and diagnosis, but it comes down to financing. That's why RDI is working with experts to develop innovative financing solutions to help health systems integrate rare diseases. We have also set-up and are leading the Lancet Commission on rare diseases, which is notably looking at ways on improving the access to care and treatment for rare diseases patients. We know this will be a major hurdle, but by translating the political momentum into concrete actions and addressing the financial barriers, I am optimistic that we will create a real impact.
To learn more about RDI and the Global Action Plan for Rare Diseases: https://www.rarediseasesinternational.org/wha-resolution/
