Rare diseases are not that rare. More than 300 million people have one of the 7,000 rare diseases around the world, and many more people are affected by the impact on their families.
On this podcast we learn more about the personal impact of rare diseases, hear about the World Health Assembly (WHA) Resolution on Rare Diseases which aims to get governments to create action plans, and speak to a private sector company on why it’s worth paying more attention to the issue.
Hosts:
Robin Pomeroy, head of podcasts, World Economic Forum
Antonio Estrella, lead, Health For All, Centre for Health and Healthcare, World Economic Forum
Guests:
Will Greene, board member, Foundation for Prader-Willi Research (FPWR)
Alexandra Heumber, CEO, Rare Diseases International:
Soraya Bekkali, senior vice president, Europe, Canada & International
Alexion, AstraZeneca Rare Disease.
Links:
White Paper: Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity: https://www.weforum.org/publications/making-rare-diseases-count-how-better-data-can-unlock-a-multitrillion-dollar-opportunity/
Why rare diseases are a proving ground for medical innovation: https://www.weforum.org/stories/2026/01/rare-diseases-and-medical-innovation/
World Health Assembly (WHA) Resolution on Rare Diseases: https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_R11-en.pdf
Related podcasts:
How Africa is harnessing tech to deliver healthcare: https://www.weforum.org/podcasts/radio-davos/episodes/africa-cdc-health/
More than just a toothache: how to tackle the huge costs of poor oral health: https://www.weforum.org/podcasts/radio-davos/episodes/dental-oral-health-crisis/
Neurotechnology could help billions of people. Has its time come?: https://www.weforum.org/podcasts/radio-davos/episodes/neurotechnology-jen-french-tom-oxley/
How one global health leader prepares teams for the unexpected: Gavi CEO: https://www.weforum.org/podcasts/meet-the-leader/episodes/sania-nishtar-gavi-preparation-global-health/
Bridging the gap in women’s health research, policy and innovation: Kearney: https://www.weforum.org/podcasts/meet-the-leader/episodes/paula-bellostas-muguerza-kearney-womens-health/
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Briefing by Valentine Rugwabiza, Special Representative of the Secretary-General for the Central African Republic and Head of the United Nations Multidimensional Integrated Stabilization Mission in the Central African Republic (MINUSCA), on the situation in the Central African Republic.
“On 28th December 2025, the Central African Republic reached an important milestone in the consolidation of the peace process and state authority,” the UN’s top official in the country told the Security Council, pointing to nationwide elections as a sign of political progress.
Valentine Rugwabiza, head of the UN Multidimensional Integrated Stabilization Mission in the Central African Republic (MINUSCA), said the combined presidential, legislative, regional and municipal polls marked a historic moment.
“These elections, which included the first municipal polls which were held since 1988, represented the most extensive electoral operations ever undertaken in the Central African Republic,” she said.
Rugwabiza described the vote as the result of joint work by the Central African Government and MINUSCA.
She said, “the mission conducted good offices and provided both technical, logistical, operational and security support. The good offices of the mission helped foster inclusivity in the electoral process. Including positive developments for parity with women, representing more than 47 percent of the voters and 45 percent of the candidates in the municipal elections.”
However, she cautioned that security challenges persist. “Ongoing attacks by attacking militia targeting civilians and local authorities remain a concern,” she said, noting that 21 voting centres could not open on the election day.
UN agencies warned the humanitarian situation in Somalia has “significantly worsened”, citing the latest food security report, “with 6.5 million people – a third of the population – facing crisis levels of hunger through March this year.”
World Food Programme (WFP)’s Ross Smith and Food and Agriculture Organization (FAO)’s Rein Paulsen briefed reporters today (25 Feb) on the recently released Integrated Food Security Phase Classification (IPC) for Somalia. They both briefed via video links from Rome. The report was released on Tuesday (24 Feb).
WFP’s Ross Smith said, “malnutrition is deepening, in 2026, we have over 1.8 million children under the age of five facing acute malnutrition, with half of these expected face severe malnutrition. And these are really alarming numbers for a country the size of Somalia.”
Smith also highlighted the urgent need for funding WFP’s activities in Somalia. He said, “the lifesaving emergency food and nutrition assistance that we provide, the support from other partners will be forced to be cut to the most vulnerable and eventually will come to an end post April.”
The WFP official continued, “Due to these critical funding shortfalls, our assistance WFP assistance has decreased from 64 districts to 42, leaving entire areas without food assistance. And we’re currently only assisting just over 600,000 of the 6.5 million people facing crisis levels of hunger. This is down from 2.2 million people that we supported this time last year.”
Smith pointed out that life saving nutrition services have also been slashed by more than half. He said, “from over 400,000 pregnant and breastfeeding women and children under five receiving support to just about 100,000 in January of this year.”
He added, “cash transfers have been significantly reduced, and this is critical to mention because there are many places where access is limited and where markets are still functioning and cash transfers are the only option for support in Somalia.”
For his part, FAO’s Rein Paulsen highlighted the drought in the country is having a “devastating” effect on agriculture.
He explained, “concretely, this means widespread crops and livestock losses in addition to large scale displacements of people. And when reference was made to two rainy seasons that were misses, just to put that in number terms, when it comes to food production, the last main cereal harvest was 83 per cent lower than the long term average, between 1995 and 2025.”
Paulsen also said, “what’s unfolding in Somalia now needs to be and should be understood primarily as a rural crisis, not exclusively, but primarily.”
He explained that two thirds of the drought hotspots, 19 of the 30 hotspots identified in this IPC analysis are in rural areas in the country.
For FAO activities, it needs 85 million US dollars to support a million of the most vulnerable, high risk, underserved rural people at the moment, Paulsen said, adding “to date, we have just six million US dollars to respond, so we are really running on fumes.”
Source: Federal Bureau of Investigation (FBI) (video statements)
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The European Commission reaffirms that hormone-treated beef, including products containing estradiol, cannot enter the EU market unless it fully complies with strict EU food safety standards.
The EU maintains some of the highest health and safety rules in the world — protecting consumers while ensuring fair trade conditions.
Food safety remains non-negotiable.
Highlights:
– Sudan
– Central African Republic
– Western Sahara
– Occupied Palestinian Territory
– Lebanon/Israel
– Waste Trafficking
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SUDAN
The UN remains deeply concerned by the escalating harm to civilians as fighting intensifies in North Darfur State.
The International Organization for Migration tells us that nearly 2,700 people were displaced following attacks on Misteriya town in the locality of Kebkabiya in recent days. A local organization, the Sudan Doctors Network, says that 28 civilians were killed and 39 others were injured in these attacks.
We call again for the protection of civilians and civilian infrastructure and for the parties to the conflict to adhere to their obligations under international humanitarian law.
CENTRAL AFRICAN REPUBLIC
This morning, Valentine Rugwabiza, the head of our peacekeeping mission in the Central African Republic, briefed the Security Council via video link.
Reflecting on the elections late last year, she said the Central African Republic reached an important milestone with the first municipal polls held since 1988, and the most extensive electoral operation ever undertaken in the Central African Republic.
Ms. Rugwabiza noted that serious security challenges persist, particularly in the southeast, in the Haut-Mbomou Prefecture. In the northeast, she added, the conflict in Sudan has driven over 11,000 refugees into the Vakaga Prefecture, adding pressure on already limited services and it is also heightening local tensions.
The Special Representative added that the mission remains engaged with local authorities and communities and continues to consolidate its presence to enhance the protection of civilians.
Finally, turning to the impact of liquidity constraints, the Special Representative said the mission is implementing efficiency measures, while ensuring that available resources are dedicated to the protection of civilians, and that the Mission’s footprint preserves coverage in priority areas.
Full Highlight: https://www.un.org/sg/en/content/noon-briefing-highlight?date=2026-02-25
In this 360° virtual reality video, follow Major Sifamwelwa Akalaluka from Zambia as she helps maintain an uneasy calm along the Sudanese border in the Central African Republic and directs MINUSCA’s community engagement efforts in Birao.
Join her as she leads a Mixed Engagement Platoon observing, engaging, and reporting – helping to protect communities, including women and children at the fragile border.
MINUSCA, the UN peacekeeping mission in the Central African Republic, was established in 2014 and maintains almost 17,000 personnel across the country.
Diverse peacekeeping teams such as Major Akalaluka’s make UN Peacekeeping more efficient and responsive to the needs of those we serve.
This video is made possible thanks to the support of the Permanent Mission of Canada to the United Nations.
It is a partnership between the Department of Peace Operations, the Department of Global Communications and the UN Mission in the Central African Republic.
