Important changes in pharmacies come into effect on April 1
Starting April 1, 2026, Poland's Ministry of Health will implement significant updates to the list of reimbursed medications, introducing 16 new therapies, primarily for cancer and rare diseases.
Families of children with rare diseases face difficulties in obtaining treatment in Itapetininga
Two families in Itapetininga, Brazil, struggle to secure treatment for their children diagnosed with rare diseases, facing legal challenges despite their efforts.
The disease is indeed rare. But they will not receive treatment because they are not exceptional.
The article discusses the challenges faced by patients with rare diseases in accessing treatment due to a lack of recognition and support.
Discussions on the National Rare Disease Plan Continue in Lithuania
Lithuania is advancing discussions on a new National Rare Disease Plan aimed at addressing the challenges faced by patients with rare diseases and their families.
Treatment of neuromuscular diseases in Latvia: long time to diagnosis and unavailable medications
In Latvia, neuromuscular diseases, which affect about a thousand people, often have a lengthy diagnosis process, limited access to genetic testing, and a lack of available medications.
What is Angelman syndrome, the rare genetic disorder that alters neurological development from childhood
Angelman syndrome is a rare genetic disorder that significantly alters neurological development from childhood, with many cases diagnosed incorrectly or delayed despite advances in molecular diagnostics.
Dr. Katarzyna Muras-Szwedziak: My specialization is not financially viable
Dr. Katarzyna Muras-Szwedziak highlights the urgent need for systemic changes to improve the situation for patients with rare diseases in Poland, emphasizing the financial and diagnostic obstacles they face.
Rare Diseases: The Challenge That Requires a National Strategy
The article discusses the need for a national strategy in Mexico to address the challenges posed by rare diseases, which collectively affect around eight million people in the country.
Unifor inaugurates center for treatment and research of rare diseases
The Edson Queiroz Foundation has inaugurated the Center for Neurodevelopment in Rare Diseases at the University of Fortaleza, aimed at providing integrated care for young children.
Important changes coming in drug imports via IFET
IFET's CEO announced significant improvements in drug imports, resulting in reduced shortages and waiting times, while the Health Ministry prepares new measures to further cut costs.
Healing and Accompaniment: Takeda Korea Pharmaceutical and the Korea Rare and Intractable Disease Association Successfully Completed 'Angel Spoon Day'
Takeda Korea Pharmaceutical and the Korea Rare and Intractable Disease Association successfully held 'Angel Spoon Day' on February 26 to support families affected by rare and intractable diseases.
"Policy Improvements Have Become Clear, but Further Awareness Expansion Is Needed"
Every February 28 (or February 29 in leap years) is World Rare Disease Day, an initiative to raise awareness and improve treatment environments for the over 300 million people globally suffering from various rare diseases.
The story of the woman who shrank almost 30 centimeters due to a rare disease
Caroline King, a 63-year-old woman, shares her story of living with a rare liver disease to raise awareness and inspire hope.
Queen Letizia remembers Elena, a young woman with Sanfilippo syndrome, to call for more research on rare diseases
Queen Letizia highlighted the story of Elena, a young girl with Sanfilippo syndrome, to advocate for increased research on rare diseases in Spain, where only a small percentage of these conditions have specific treatments.
Center for Treatment and Research in Rare Diseases is inaugurated at Unifor
The Center for Neurodevelopment in Rare Diseases was inaugurated at the University of Fortaleza to provide specialized care for children with rare neurological disorders.
Unicamp's HC is the only one in SP to collect samples for a new genetic test for rare diseases through SUS
The Unicamp Hospital in São Paulo is now the sole institution authorized to conduct sample collection for a new genetic test aimed at diagnosing rare diseases, significantly shortening the waiting time for families.
Rare Diseases in Lithuania: 100 Thousand People Await Systemic Solutions
A recent event in Vilnius dedicated to Rare Diseases Day gathered patient organizations, specialists, and decision-makers to discuss systemic solutions for over 100,000 individuals affected by rare diseases in Lithuania.
CHSL is the only Reference Center for Rare Diseases in the south and southwest of Minas
The CHSL in Brazil has been designated as the sole reference center for rare diseases in the southern and southwestern regions of Minas Gerais.
The woman who lost 30 cm in height after being diagnosed with a rare disease
A woman lost nearly 30 centimeters in height after being diagnosed with a rare liver disease and is sharing her story to raise awareness.
China AI boosts cancer screening, rare disease diagnosis
Chinese advancements in artificial intelligence are enhancing the efficiency of cancer screening and facilitating the diagnosis of rare diseases.
Casa dos Raros celebrates 3 years and reduces the journey for diagnosing rare diseases in RS; learn how to seek care
The Casa dos Raros in Porto Alegre celebrates its third anniversary, focusing on reducing the time taken for patients to receive diagnoses of rare diseases in Brazil.
Rare Diseases: More than 70% of Patients Turned to Savings or Asked for Family Help for Their Treatment
A significant number of patients with rare diseases in Argentina rely on personal savings or family assistance for their treatment costs.
Rare Diseases: Significant Delays in Accessing Treatments for Patients in Greece
This article discusses the challenges faced by patients with rare diseases in Greece regarding access to treatments, emphasizing the impact of the COVID-19 pandemic on healthcare and clinical research.
National Lottery: Check the draw of Saturday, February 28
The National Lottery draw took place on February 28 in Spain, featuring various prizes and special recognition for a cause.
Rare Diseases: The Invisible Health Crisis Affecting 600,000 Greeks
The article discusses the impact of rare diseases on approximately 600,000 individuals in Greece, highlighting personal stories of those affected.
[Healing and Companionship] Pharmaceutical Companies Join Forces to Raise Awareness on Rare Disease Day
On Rare Disease Day, various companies in South Korea united to raise awareness about the challenges faced by patients with rare diseases, coinciding with a reported increase in the number of new cases in the country.
Advertising Professional Discovers Sjögren's Syndrome Ten Years After Facial Swelling and Difficulty Eating: 'Shock'
A 34-year-old advertising professional from São José do Rio Preto, Brazil, discovered she has Sjögren's Syndrome a decade after first experiencing symptoms like facial swelling and difficulty eating.
Rare Diseases Day: why it is commemorated on the last day of February
Rare Diseases Day is observed on the last day of February each year to raise awareness about uncommon diseases and the challenges faced by those who suffer from them.
After being diagnosed with ALS, psychologist overcomes limitations and helps other patients with rare diseases: 'bringing hope'
A Brazilian psychologist diagnosed with ALS helps raise awareness and support for patients with rare diseases.
Diagnosis in 12 months: Europe wants to ensure early detection of rare diseases
The European Parliament is finalizing a legislative initiative aimed at creating a binding framework for rare diseases, with a target for diagnosis within one year when medically possible.
Rare diseases: Brazilians wait 5.4 years for diagnosis, study reveals; check the most frequent conditions
A recent study reveals that Brazilians with rare diseases wait an average of 5.4 years for a definitive diagnosis, with significant implications for their health and access to treatment.
Rare Diseases: Millions Await a Diagnosis That Does Not Arrive
Millions of people suffering from rare diseases are waiting for timely diagnoses and equitable healthcare access, which remain significant challenges globally.
Diagnosis of rare diseases is delayed due to nonspecific symptoms and lack of preparedness in healthcare
Individuals with rare diseases in Brazil experience long diagnostic delays that hinder timely treatment and quality of life improvements.
Brazil experiences paradox between advances in therapies for rare diseases and access barriers
Brazil is facing a paradox where advancements in precision medicine and gene therapies provide new treatment options for rare diseases, but access barriers remain.
Ceará receives free collection points for genetic tests for rare diseases
Ceará has introduced free collection points for genetic tests aimed at identifying rare diseases in public health.
MAARJA KRAIS-LEOSK ⟩ The frequency of kindness towards rare diseases is astounding!
The article discusses the challenges faced by families with rare disease patients in Estonia, highlighting the need for psychological, social, and practical support beyond medical care.
South Africa: As Another Rare Diseases Day Swings By, Is SA Ready to Take It More Seriously?
The article discusses the impact of rare diseases in South Africa, as highlighted on International Rare Disease Day, emphasizing the need for improved awareness and resources for affected individuals.
“There is much to modify for early diagnosis”: Specialists gather in Quito to propose improvements in the treatment of rare diseases
Specialists in Quito discussed the challenges and proposed improvements for the treatment and early diagnosis of over 400 rare diseases in Ecuador.
NVSC: Rare diseases that can be brought back after vacation
The article discusses rare diseases that travelers may encounter and bring back after visiting endemic regions, with a focus on dengue fever and malaria.
People with rare diseases wait for diagnosis for years, a patient registry is meant to help
A new patient registry aims to address the long wait times for diagnosis faced by individuals with rare diseases in Czechia.
With the increase in patients, artificial intelligence models will be created in Lithuania for the diagnosis of rare diseases
A project aimed at developing artificial intelligence models for diagnosing rare diseases has been launched in Lithuania.
Over 22 million euros allocated last year for the treatment of very rare conditions
Lithuania has allocated over 22 million euros for the treatment of very rare diseases, allowing 469 patients to receive necessary medical care without financial burden.
LIVE: 'Rare Disease Forum 2026' – attended by experts from across Europe
A unique event in Latvia brings together patients, healthcare professionals, policymakers, and international experts to discuss rare diseases.
The congress in Ciudad Real of wandering anti-vaxxers from the Republic of Menda Lerenda: with 'VIP' guests and a Manchego cocktail for 40 euros
The first congress addressing Vaccine Damage: Autism and Rare Diseases is set to take place in Ciudad Real, despite opposition from health authorities due to its promotion of unscientific information.
Thousands in dire situation, the government must respond
Thousands of families in Iceland are struggling to get support for their children suffering from rare diseases, as advocacy for better governmental response grows.
"My life depends on specific medications," - the story of a patient losing erythrocytes
Veronika Grigorjeva suffers from paroxysmal nocturnal hemoglobinuria (PNH), a rare and serious disease that leads to the destruction of red blood cells, threatening her life without necessary medication.
Chinese AI model surpasses doctors in diagnosing rare diseases
A Chinese research team has developed an AI model called 'DeepRare' that significantly outperforms human doctors in diagnosing rare diseases.
Rare liver diseases: why are there no symptoms?
The article discusses a recent international conference focusing on rare liver diseases and highlights the importance of collaboration among European experts in treating these conditions.
The generation changing medicine: The 28-year-old Greek biologist behind new therapy and the next battle against cancer
Andreas Metousis, a 28-year-old Greek biochemist, is pioneering critical research in the fight against rare, deadly diseases during his PhD at the Max Planck Institute.
Rare Diseases Festival - 'Every Day Rare'
The first Rare Diseases Festival titled 'Every Day Rare' will take place from February 26 to March 1 in Athens, highlighting the lives of those with rare conditions through art and culture.