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Thursday 27 November

Source : © European Union, 2025 - EP

Thursday 27 November

Source : © European Union, 2025 - EP

Thursday 27 November

Source : © European Union, 2025 - EP

Written by Laurence Amand Eeckhout.

Rare diseases, often underdiagnosed and overlooked, affect over 36 million people in the EU and around 300 million worldwide. The EU supports numerous initiatives to improve diagnosis, care, data sharing and research. The European Parliament is advocating for a comprehensive action plan at EU level to address persistent challenges such as fragmented research, lengthy diagnosis times, limited access to innovative treatment, and the overall quality of life for patients.

Background

There is no formal definition of rare disease. In the EU, rare diseases are those that meet a prevalence threshold of no more than 5 affected persons per 10 000 (i.e. 1 in 2 000). Around 36 million people in the EU therefore live with a rare disease (about 8 % of the EU population). Approximately 6 000 to 8 000 rare diseases have been identified, though the exact number fluctuates as new conditions continue to be discovered and classified. According to the European Medicines Agency (EMA), fewer than 1 000 diseases benefit from an even minimal level of scientific knowledge, and despite scientific advances, about 95 % of the known rare diseases still lack approved treatment. Diagnostic odysseys remain long for many patients: the average time for an accurate diagnosis in the EU is between four and five years. Common symptoms can also sometimes mask underlying rare diseases, resulting in misdiagnosis and delayed treatment. Around 80 % of rare diseases have a genetic cause.

Rare diseases significantly affect a person’s quality of life. Additionally, stigma and a lack of public awareness can deepen feelings of isolation and negatively impact the wellbeing of both individuals living with a rare disease and their families.

EU action on rare diseases

Member States are responsible for their own healthcare policies (Article 168 of the Treaty on the Functioning of the EU). However, the EU can play a supporting role and add value to national action. In the pharmaceutical sector, the EU offers incentives to encourage companies to research and develop medicines for rare diseases at EU scale, which otherwise would not be developed (known as orphan drugs or orphan medicinal products). The European Commission grants ‘orphan designation’ following a recommendation from the Committee for Orphan Medicinal Products at the EMA. In 2023, the EU launched the ongoing revision of its pharmaceutical legislation (including revision of the ‘EU Orphan Regulation’), which was followed in March 2025 by a proposed critical medicines act, which would also address the needs of patients with rare diseases. Directive 2011/24/EU currently facilitates cross-border healthcare, including for these patients. The EU supports the codification and inventory of rare diseases through the Orphanet portal, the ORPHAcode classification system and the European Platform on Rare Disease Registration.

Research is essential to better understand the causes and characteristics of rare diseases and develop new diagnostics and therapies; the EU has supported rare disease research through successive framework programmes. Given the limited knowledge available, sharing data at EU level is vital. A European partnership on research on rare diseases was launched in 2024, co-funded by the EU (Horizon Europe) and counting 180 partners from 37 countries: ERDERA will drive research in prevention, diagnosis, and treatment of rare diseases, with an estimated overall budget of €380 million to 2031, of which approximately €150 million will come from the EU.The EU life sciences strategy, adopted by the Commission in July 2025, places a strong emphasis on advancing research and innovation in rare diseases. This strategy is closely linked to the expected EU biotech act, to be proposed in mid-December 2025, which aims to strengthen the EU’s competitiveness in biotechnology, including on rare disease therapies, while enhancing patient outcomes. The EU also contributes to research coordination on rare diseases through the European reference networks, which enable specialists to discuss cases of patients affected (see textbox).

The European reference networks (ERNs) were established in 2017 and are evaluated regularly. As of 2024, the 24 ERNs include more than 1 600 specialised centres located in around 380 hospitals across 27 Member States and Norway. They cover the main clusters of rare disease: bone, skin, craniofacial anomalies and ear-nose-throat or intellectual and other neurodevelopmental disorders, inherited and congenital (digestive and gastrointestinal) anomalies, epilepsies, adult solid and paediatric (haemato-oncology) cancers, genetic tumour risk or malformation syndromes, kidney, uro-recto-genital, neuromuscular, heart, hepatological or haematological, eye, respiratory, neurological, multisystemic vascular and connective tissue and musculoskeletal disease, as well as immunodeficiency-autoinflammatory-autoimmune and paediatric rheumatic disease and hereditary metabolic disorders and transplantation in children.

In March 2024, the Commission launched the three-year JARDIN joint action to integrate ERNs into national health systems, with a total funding of €18.75 million (€15 million from the EU and €3.75 million from the Member States). A few months later, the Commission launched a new IT platform to better support the ERNs (Clinical Patients Management System 2.0). Since 2017, ERNs have conducted more than 4 500 virtual panels on patients suffering from rare diseases. In 2023, the Commission extended funding for the ERNs, via the EU4Health programme, for another four years (2023-2027), at €77.4 million.

Many patient organisations (including EURORDIS, a non-profit alliance of over 1 000 rare-disease patient organisations from 74 countries) have repeatedly called for an EU action plan on rare diseases. In 2024, the Council invited the Commission to adopt a comprehensive EU-level approach to rare diseases, including a European action plan. The European Economic and Social Committee has supported this call. It also adopted an exploratory opinion on AI, big data and rare diseases in September 2025.

Patients’ organisations have expressed concern that the proposed multiannual financial framework (MFF) for 2028-2034 does not envisage a standalone health programme (to succeed EU4Health) and that health priorities, including rare diseases, could be diluted, once integrated into a broader comprehensive competitiveness fund.

European Parliament position

The European Parliament has been a driving force behind more coherent and ambitious health policies, consistently advocating for equal access to diagnosis and treatment, improved data sharing, and the advance of research and innovative medicines. This commitment was reflected in its 2020 resolution calling for an action plan for rare diseases as part of a post-pandemic public health strategy and its 2021 resolution on the EU’s pharmaceutical strategy. Throughout the current legislative term, Parliament has submitted several written questions to the Commission, addressing key issues such as orphan drugs, critical medicines, the development of a European action plan on rare diseases and adequate funding in the next MFF. Most recently, in April 2025, during a plenary debate attended by Olivér Várhelyi, Commissioner for Health and Animal Welfare, Members of Parliament voiced broad cross-party support for the establishment of a comprehensive EU-level action plan on rare diseases.

Parliament’s Committee on Public Health (SANT) is preparing a legislative own-initiative report (INL) on an EU rare disease action plan (rapporteur Nicolás González Casares, Spain, S&D). It will take into consideration the input provided by more than 4 000 respondents to a public consultation launched in February 2025.

Read this ‘at a glance’ note on ‘Rare diseases – strengthening EU action‘ in the Think Tank pages of the European Parliament.

Fragmented markets, regulatory hurdles and slow uptake threaten Europe's ambitions to lead in life sciences by 2030

In today’s edition: Magnus Brunner defends Europe’s hard-edged migration shift as he rewrites the asylum rulebook, MEPs brace for a pre-Christmas immunity vote tied to Qatargate, and Big Oil drags the EU to court over its new carbon-storage mandate

Credit: Sergey Bobylev/RIA Novosti/Anadolu via Getty Images

By Inés M. Pousadela
MONTEVIDEO, Uruguay, Nov 27 2025 (IPS)

Three years ago, Captain Ibrahim Traoré seized power in Burkina Faso with two promises that have proved hollow: to address the country’s deepening security crisis and restore civilian rule. Now he has postponed elections until 2029, dissolved the independent electoral commission and pulled the country out of the Economic Community of West African States (ECOWAS) and the International Criminal Court (ICC). Burkina Faso has become a military dictatorship.

The journey began in January 2022, when protests over the civilian government’s failure to address jihadist violence opened the door for Lieutenant-Colonel Paul-Henri Sandaogo Damiba to seize power. Transitional authorities promised a return to democracy within two years, agreeing to a timeline with ECOWAS. But eight months later, Traoré led a second coup, accusing Damiba of failing to defeat insurgents.

When Traoré’s promised deadline of June 2024 approached, the military government convened a national dialogue that most political parties boycotted. The resulting charter extended Traoré’s presidency until 2029 and granted him permission to stand in the next election, transforming what was meant to be a transitional arrangement into consolidated personal power. The dismissal of Prime Minister Apollinaire Joachim Kyelem de Tambela and the dissolution of his government in December 2024 removed the pretence of civilian participation in governance.

As the military has entrenched its rule, civic freedoms have evaporated. The CIVICUS Monitor downgraded Burkina Faso’s civic space rating to ‘repressed’ in December 2024, reflecting the systematic silencing of dissent through arbitrary detention and a particularly sinister tactic: forced military conscription of critics. Four journalists abducted in June and July 2024 disappeared into the military, with authorities announcing they had been enlisted. In March 2025, three prominent journalists who spoke out against press freedom restrictions were forcibly disappeared for 10 days before reappearing in military uniforms, their professional independence erased at gunpoint.

Civil society activists have suffered similar fates. Five members of the Sens political movement were abducted after publishing a press release denouncing the killing of civilians. The organisation’s coordinator, human rights lawyer Guy Hervé Kam, has been repeatedly detained for criticising military authorities. In August 2024, seven judges and prosecutors investigating junta supporters were conscripted; six reported to a military base and have not been heard from since. This weaponisation of conscription transforms civic engagement into grounds for forced military service, effectively criminalising dissent while claiming to mobilise national defence.

Meanwhile the security situation that supposedly justified these coups has dramatically worsened. Deaths from militant Islamist violence have tripled under Traoré’s watch, with eight of the 10 deadliest attacks against the military occurring under his rule. Military forces now operate freely in as little as 30 per cent of the country. The military has committed mass atrocities: in the first half of 2024, military forces and allied militias killed at least 1,000 civilians. In one incident in February 2024, soldiers summarily executed at least 223 civilians, including 56 children, in apparent retaliation for an Islamist attack.

Conflict has displaced millions, with independent estimates placing the numbers of internally displaced people at between three and five million, far exceeding the government’s last official count of just over two million in March 2023. Some are fleeing across the border. Around 51,000 refugees arrived in Mali’s Koro Cercle district between April and September 2025, overwhelming host communities already struggling with fragile public services. Multiple concurrent epidemics, including hepatitis E, measles, polio and yellow fever, compound the humanitarian crisis in Burkina Faso.

To avoid accountability for these failures, the junta is withdrawing from international oversight. In January, following their joint exit from ECOWAS, which they characterised as being under foreign influence and failing to support their fight against terrorism, military-run Burkina Faso, Mali and Niger formed the Alliance of Sahel States. In September, the three juntas announced withdrawal from the ICC, mischaracterising the body that holds human rights abusers to account as a tool of neocolonial repression. These moves leave victims of extrajudicial killings, torture and war crimes with no realistic prospect of accountability.

The regime’s online propaganda machine has proved remarkably effective in justifying its intensifying repression. Traoré has cultivated an image as a young pan-African hero fighting western imperialism. To some young people across Africa and the diaspora, he represents the charismatic leadership needed to break with discredited politics and colonial relationships. This reputation is built on extensive disinformation that overstates progress, downplays human rights violations and portrays withdrawal from international institutions as bold resistance rather than an evasion of accountability.

The junta’s anti-imperialist rhetoric obscures a simple reality: it has replaced one troubling relationship with another. Having expelled French forces, Burkina Faso has turned to Russia for military support. Russian mercenaries now operate extensively alongside national forces, bringing no pressure to respect human rights while offering Vladimir Putin a shield from accountability for his war in Ukraine. The junta has recently granted a company linked to the Russian state a licence to mine gold.

Yet the democratic ideal survives. Civil society leaders continue to speak out, journalists continue to report and opposition figures continue to organise, despite the enormous personal risks. Their courage demands more than statements of concern.

In the face of the Trump administration’s sudden termination of USAID programmes, other international donors must step up and establish emergency funding mechanisms to support civil society organisations and independent media operating under severe restrictions in Burkina Faso or in exile. Regional institutions must impose targeted sanctions on officials responsible for human rights violations and maintain pressure for democratic restoration. Without sustained international solidarity with Burkina Faso’s democratic forces, the country risks becoming another cautionary tale of how military rule, once consolidated, proves extraordinarily difficult to reverse.

Inés M. Pousadela is CIVICUS Head of Research and Analysis, co-director and writer for CIVICUS Lens and co-author of the State of Civil Society Report. She is also a Professor of Comparative Politics at Universidad ORT Uruguay.

For interviews or more information, please contact research@civicus.org

 

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Far right MEP Elena Donazzan is also keen for the proposed space law to keep the US on side, as well as pushing for a simplification agenda

International Criminal Court. Credit: UN Photo/Rick Bajornas

By Thalif Deen
UNITED NATIONS, Nov 27 2025 (IPS)

The US sanctions on the International Criminal Court (ICC) have intensified the rigid isolation of judges and officials of the Court based in The Hague, Netherlands.

According to an interview with the French judge Nicolas Guillou, published in Le Monde, ICC judges are also being refused access to American websites and credit cards.

“The sanctions, imposed by the United States after the ICC issued arrest warrants for Israeli officials accused of war crimes in Gaza, have severely impacted the daily lives and professional operations of the sanctioned individuals”.

Judge Guillou has described his situation as being “economically banned across most of the planet,” forcing him into a lifestyle reminiscent of the pre-internet era.

Asked for a response, UN Spokesperson Stephane Dujarric told reporters: “Sadly, he’s not the only person linked to the ICC who’s been placed under unilateral sanctions.”

As you know, the ICC is separate from the UN Secretariat. “That being said, we believe that the International Criminal Court is a very important element of the international justice system. It was set up by Member States. We don’t believe that its members should be targeted by unilateral sanctions, which as I think, as the article says and as we know, have a deep impact on people and their families.”

ICC Deputy Prosecutor Nazhat Shameem Khan, who addressed the Security Council on the Situation in Libya on November 25, also focused on life under US sanctions.

The progress towards justice in Libya, she pointed out, has been delivered despite what are also “unprecedented headwinds faced by the Court”.

“I must be clear that coercive measures and acts of intimidation against the ICC, civil society and other partners of justice do not serve anyone other than those who wish to benefit from impunity in Libya and in all situations that we address.”

It is the victims of murder, sexual violence, torture and the other most serious crimes addressed by our Court that stand to lose the most from these coercive actions.

“I firmly believe that is not a position that is welcomed by any member of this (Security) Council, and it is my sincere hope that we can rebuild a common ground between us for collective, effective action against atrocity crimes,” declared Khan.

Meanwhile, the International Bar Association (IBA) has condemned the imposition of additional sanctions against ICC judges and officials by the US administration as an attack against the global rule of law and the independence of judges, and calls on all ICC States Parties to take actions to protect the Court.

IBA President Jaime Carey is quoted as saying: ‘Judges and prosecutors must be able to carry out their work without fear of retribution. The IBA continues to stand for the independence of judges and lawyers, a fundamental principle of the rule of law.’

Dr. Alon Ben-Meir, a retired professor of international relations, most recently at the Center for Global Affairs at New York University (NYU), told IPS the US imposed sanctions on two ICC trial judges, Nicolas Guillou and Kimberly Prost, and against two Deputy Prosecutors, Nazhat Shameem Khan and Mame Mandiaye Niang.

They were accused of supporting “illegitimate ICC actions against Israel, including upholding the ICC’s arrest warrants targeting Israeli Prime Minister Netanyahu and former Defense Minister Gallant, since they assumed leadership for the ICC’s Office of the Prosecutor.” The sanctions ban the four from entering the US and block their US assets.

While the IBA has condemned the sanctions against ICC judges and officials as an attack on the global rule of law and judges’ independence and called on all ICC States Parties to take actions to protect the Court, several other measures can be taken to inhibit, if not stop, Trump from continuously using the power of his office to serve his ego and his misguided political agenda, he said.

First, other countries and international bodies can put collective diplomatic pressure on the US to reverse or reconsider these sanctions. This may involve negotiations or leveraging alliances to show that this kind of punitive action isn’t widely supported.

Second, the International Criminal Court itself, or other international legal bodies, might issue statements condemning the sanctions or seek support from other member states. Although the ICC doesn’t have direct enforcement power over US policies, it can still rally international opinion and try to create global pushback.

Third, on the US side, Congress could raise domestic legal and political challenges if there’s significant opposition within the US; those sanctions could be challenged or eventually reversed. With the court of public opinion on their side, sometimes, just the threat of political backlash can make the Trump administration reconsider.

Fourth, the IBA should urge other international legal organizations or human rights groups to create a broader coalition of support. By doing so, they can amplify pressure on the US government and show that the legal community worldwide stands firmly against such sanctions.

Fifth, the IBA can engage in direct advocacy with other governments to raise this issue at diplomatic forums such as the United Nations or other international gatherings. Essentially, it can continue to use its platform to advocate for broader coalitions of support, keep the issue in the spotlight, and secure direct support to overturn US policy and help generate international momentum.

In short, it’s usually a mix of international diplomatic pressure and domestic US political or legal checks that could be used to push back against this kind of measure. Obviously, none of these measures is easy to implement; nevertheless, they are the main avenues to consider.

“For the US to use the club of restrictive sanctions on a group of judges who are simply trying to honor humanity’s legal protections is a kind of vindictiveness akin to madness. This irrational action weakens global humanity’s legal protections. Everybody on earth has less safety and security if international law is flouted in such a way. The court is a vital component fostering international justice and peace”, said Jennings.

James E. Jennings, President, Conscience International, told IPS the Trump Administration in Washington is good at two things: chest thumping and distracting attention from the main issue at hand. The White House has now vindictively added fresh sanctions on judges at the International Criminal Court (ICC). And why? To defend Israeli impunity from charges of war crimes and worse in Gaza.

Federica D’Alessandra, Co-Chair of the International Bar Association’s Rule of Law Forum, said that “The measure has brought the tribunal’s day-to-day operations to a near standstill, raising existential concerns about its future.”

Trump, for years a practitioner of the use of fear for making his enemies back down, is trying to intimidate the judges by Mafia-like behavior. Although it won’t work in the long run because Trump will not be around forever, the strategy is working presently to delay, delay, delay justice.

Justice delayed, according to a well-known slogan, might very well be in this case justice denied. By slapping sanctions on the four ICC judges, Trump and his minions have thrown sand in the wheels of international accountability.

Even though the technique is contra bonos mores (opposed to decent morality) as long ago enacted in Roman Law, It might work in this case because it threatens to gum up the works of international order, he pointed out.

“International law is the only mechanism that can truly regulate the bloody tooth and claw of the natural order. Watch a few videos of apex predators at work in the jungle and you’ll understand what damage an unregulated dictatorship like Russia’s can do to civilian life and infrastructure in both Ukraine and Russia. Israel’s “mad dog” Likud military regime is even worse—because Russia at least has not attacked six nations,” declared Jennings.

Meanwhile, specific impacts, according to an AI Overview, include:

• Financial Services: All accounts with major US credit card companies like Visa, Mastercard, and American Express have been deactivated. Some non-American banks have also closed their accounts due to the global reach of US sanctions.
• Online Services: Access to accounts with American tech and e-commerce companies has been terminated. This includes services such as Amazon, Google, Apple, Airbnb, and PayPal.
• Travel and Booking: Online reservations for hotels and travel services have been canceled. For example, a hotel booking made on Expedia for a location within France was canceled hours later due to the sanctions.
• General Commerce: Online commerce has become nearly impossible because one cannot know if a product or its packaging involves an American entity.

These measures effectively prohibit any American person, company, or their foreign subsidiaries from providing services to the sanctioned individuals without authorization from the Department of the Treasury’s Office of Foreign Assets Control (OFAC).

IPS UN Bureau Report

 

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