Rare diseases: latest news, reactions and political current affairs

SEDISA launches a working group to reinforce management leadership in rare disease management

The Spanish Society of Health Directors (SEDISA) has launched the Working Group for the Integral Management of Rare/Minority/Infrequent Diseases, with the aim of advancing towards a specific reference framework for health directors in addressing these pathologies within the National Health System.SEDISA recalls that, with more than 3 million people affected...

5 minutos

FEDER claims clinical trials to accelerate access to innovative therapies for rare diseases

The Spanish Federation of Rare Diseases (FEDER) underlines the essential role of clinical trials in the field of rare pathologies, defining them as a "key tool" to advance in diagnosis, scientific knowledge, and the arrival of new therapeutic options that allow for improving the quality of life of the more...

5 minutos

Catalonia, Madrid and Andalusia, leaders in research on rare diseases in Spain

Tomorrow marks the International Clinical Trials Day. Coinciding with the date, the Spanish Association of Laboratories for Orphan and Ultra-Orphan Drugs (AELMHU) has just published the 'Report on Clinical Trials for Rare Diseases in Spain 2025' The document analyzes the most relevant data on clinical trials authorized for these pathologies...

5 minutos

Catalonia, Madrid and Andalusia account for more than half of the studies on rare diseases in 2025, according to AELMHU

The Spanish Association of Laboratories of Orphan and Ultra-Orphan Drugs (AELMHU) has reported that Catalonia, Madrid, and Andalusia "accounted for more than 50 percent of studies on rare diseases in 2025, thus 'leading research' in this field in Spain.""These data confirm that research into rare diseases continues to advance and...

5 minutos

Specialists warn of the underdiagnosis of hereditary angioedema due to its similarity to common diseases

The deputy of the Allergy Service and the Hereditary Angioedema Reference Center of the Vall d'Hebron University Hospital in Barcelona, Mar Guilarte, has pointed out that underdiagnosis "continues to be a significant challenge" in hereditary angioedema (HAE), as its clinical manifestations are often confused with common pathologies, such as allergic...

5 minutos

Rare diseases: a European challenge of equity, innovation, and public health

Rare diseases have historically been relegated to the background in health agendas, despite their real impact: more than 30 million Europeans live with one of these pathologies. This figure is not marginal, but the expression of a structural challenge that tests the European Union's capacity to guarantee equity, cohesion, and...

5 minutos

Elena Nevado: "I believe that the European framework for orphan drugs must be reinforced"

Question: Let's start by talking about the amendments that insist on protecting incentives for innovation and economic viability of orphan drugs. Do you think the current European framework sufficiently guarantees that balance or that it needs to be strengthened?Answer: Responding very directly, I believe it is necessary to reinforce it,...

5 minutos

The amendments to the Neonatal Screening Law advocate for equity and for increasing the number of diseases

The famous "heel prick test" is experiencing its biggest transformation in decades. This type of screenings are key for the early detection of rare diseases, since 80% of them are of genetic origin and many of them can start to be treated before the first symptoms appear. Historically, the Ministry...

5 minutos

Rare diseases

SEDISA launches a working group to reinforce management leadership in rare disease management

FEDER claims clinical trials to accelerate access to innovative therapies for rare diseases

Catalonia, Madrid and Andalusia, leaders in research on rare diseases in Spain

Catalonia, Madrid and Andalusia account for more than half of the studies on rare diseases in 2025, according to AELMHU

Specialists warn of the underdiagnosis of hereditary angioedema due to its similarity to common diseases

Rare diseases: a European challenge of equity, innovation, and public health

Elena Nevado: "I believe that the European framework for orphan drugs must be reinforced"

The amendments to the Neonatal Screening Law advocate for equity and for increasing the number of diseases

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