'Our little girl, 2, has childhood dementia - it's every parent's worst nightmare'
The parents of a toddler with childhood dementia are advocating for government funding for research into a cure for her rare condition.
A rare disease forced Nelli Matula to rest for over a year - this is how she survived
Nelli Matula, a prominent Finnish artist, shares her journey of overcoming a rare illness that disrupted her career for over a year.
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.
Rare Disease Affects Residents Who Consumed Mushrooms in a French Mountain Village
Residents of Montchavin, a small village in the French Alps, are suffering from a rare muscle disease, drawing the attention of medical researchers.
Union disobeys court decision, and boy with rare disease has been without R$ 90,000 medication for 6 months, says family
A family from Belo Horizonte accuses the Brazilian federal government of not complying with a court order to provide a costly medication for their son, who suffers from a rare genetic disorder.
Finnish woman learned about her rare disease only at the age of 51, followed by an additional 38 diagnoses
A Finnish woman, who has lived with chronic pain for most of her life, was finally diagnosed with a rare illness at age 51, with 38 additional diagnoses following.
Theo Colker, grandson of Deborah Colker, dies after battling a rare disease: 'A warrior who became light'
Theo Colker, the 14-year-old grandson of choreographer Deborah Colker, has passed away after a struggle with the rare skin disease epidermolysis bullosa, which inspired a theater production.
Three GPs put toddler's symptoms down to infection - but they were wrong
A mother from Essex reveals that her son's rare brain tumor was misdiagnosed as infections by three different GPs.
A Unique Operation is Performed in Kaunas on a Boy from Latvia with a Rare Genetic Disease – Electrodes are Implanted in His Brain
A 10-year-old boy from Latvia with a rare genetic condition has undergone a unique operation in Kaunas to implant electrodes in his brain.
Grandmother, sons, and granddaughter - a Sudovian family suffers from a rare Fabry disease
A family from Sudovia faces challenges due to Fabry disease, a rare inherited metabolic disorder.
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.
Singer Nick Jonas' 'sister' Maya dies at the age of 30
Maya Kibel, a close childhood friend of Nick Jonas and his brothers, has passed away at the age of 30 after battling a rare disease.
MAD ⟩ Two Estonians Walk Backwards Through Europe to Save a Toddler's Life
Two Estonians are walking backwards through Europe to raise money for their niece's intensive care treatment in the United States and to raise awareness about a rare disease.
Young woman from Goiás who became quadriplegic participates in street race in Goiânia
Roberta Rodrigues, a 33-year-old woman from Goiás, participated in a street race in Goiânia using a wheelchair, demonstrating resilience after battling a rare autoimmune disease that has left her quadriplegic five times.
A Rare Disease and an Irreversible Diagnosis: The Story of Beltrán That Led His Family to Promote a National Law
The story of Beltrán Romero Feris highlights the challenges in diagnosing adrenoleukodystrophy, leading to a national initiative for newborn screening.
26-year-old with rare condition had to stand to eat and was sick 60 times a day
A 26-year-old woman underwent life-changing surgery to treat a rare condition that made it difficult for her to swallow, significantly impacting her health.
Young woman who became quadriplegic five times recalls the process: 'I was either sick or chasing my future'
Roberta Rodrigues, a 33-year-old woman from Brazil, has faced being quadriplegic five times due to a rare neurological disease, sharing her struggles to achieve her goals amidst recurring health crises.
Saimi Hoyer diagnosed with a rare disease - Significant impact on daily life
Saimi Hoyer reveals her diagnosis of a rare hereditary condition and the challenges it brings in her everyday life.
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.
We have to attempt the impossible
A mother grapples with her son Héctor's rare and untreatable Tay-Sachs disease, igniting a wave of solidarity amid a cruel digital landscape.
"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.
Boy, two, diagnosed with condition so rare it's never been seen before
Two-year-old Oli-Jay Morris is critically ill due to a unique gene mutation that has led to a rare mitochondrial disease, but new treatment options have emerged to improve his health.
The woman who shrank nearly 30 centimeters due to a rare disease
A British woman, Caroline King, has shared her story of battling a rare liver disease that caused her to shrink nearly 30 centimeters, advocating hope and resilience on Rare Disease Day.
Young Goiânia woman who became quadriplegic five times due to rare disease celebrates progress: 'I am already much better than before'
Roberta Rodrigues, a 33-year-old physiotherapist from Goiás, celebrates her recovery progress from Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) after becoming quadriplegic five times.
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.
With a rare disease, Father Márlon Múcio is hospitalized and sedated again in a hospital in the interior of SP
Father Márlon Múcio, a resident of Taubaté, Brazil, has been hospitalized and sedated due to complications from a rare condition known as Riboflavin Transporter Deficiency.
Meet the story of the young woman from Goiás who became quadriplegic five times due to a rare disease
Roberta Rodrigues, a 33-year-old physiotherapist from Goiás, has experienced quadriplegia five times due to a rare autoimmune neurological disease.
Michaela in Umeå got new lungs – saved at the last moment
Michaela Andersson, who suffered from a rare and severe lung disease, received a lung transplant just in time to save her life after a rapid decline in health.
Young man who was accepted into medical school at three universities after taking the Enem in the hospital believes that his experience as a patient will help him in his profession.
A young man diagnosed with a rare disease achieved admission to medical school in three universities after taking a national exam while hospitalized, and he believes his patient experience will inform his future practice as a doctor.
Queen Letizia returns to the jacket suit on her visit to Castellón and enlivens it with three expert fashion tricks
Queen Letizia of Spain showcased her fashion acumen by wearing a jacket suit during her visit to Castellón, where she presided over an event for Rare Disease Day.
Young man from Pará with rare disease passes entrance exams at three public universities after taking the Enem in the hospital
A young man from Pará has been accepted into three medical programs despite facing a severe rare disease that required him to take the national exam while hospitalized.
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.
Rare disease prevents Saimi Hoyer from hugging people - "It feels bad"
Entrepreneur Saimi Hoyer is forced to avoid human contact during the influenza outbreak due to a rare disease called CVI.
Rare disease took 30 cm from a woman: 'The body is amazing, never give up!'
63-year-old Caroline King from Wiltshire, England, experienced a horrifying medical ordeal due to a rare liver disease that drastically altered her appearance and height.
'My son won't survive his teens - being told nothing can be done is a shock'
A mother reveals her shock at her son Frankie being diagnosed with a rare genetic disorder that doctors say is unlikely to allow him to survive past his teens.
The woman who lost 30 cm in height after being diagnosed with a rare disease
A woman shares her experience of losing nearly 30 centimeters in height due to a rare liver disease 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.
Boy with first case of rare genetic disease identified in Brazil arrives in the US for treatment
Eduardo Silva Amaral, the first diagnosed case of hereditary spastic paralysis type 50 in Brazil, has arrived in Dallas, USA, for treatment after raising $2.3 million.
Young man with a rare disease takes university entrance exam in hospital and gets accepted into medicine at three public universities
Ítalo Cantanhede, a 17-year-old Brazilian student with a rare disease, successfully passed the university entrance exam while hospitalized and gained admission to three public medical schools.
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.
[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.
[Healing and Companionship] Maeil Dairies delivers customized 'Heart Meal Box' for children with congenital metabolic disorders
Maeil Dairies has completed the '2025 Absolute Heart Meal Campaign' to support children with congenital metabolic disorders and their families, ahead of World Rare Disease Day.
Facing a Rare Disease, She Encountered a Complex Maze of Challenges
María Luz Davola finally received a diagnosis after ten years of suffering from unexplained symptoms, leading to a treatment that improved her quality of life.
Letter to my son with a disability: the day I understood that Alvarete didn't need me to be angry with life
The author reflects on his journey as a father to a child with a disability, emphasizing the importance of attitude and acceptance.
‘My rare disease left me blind and obese, it took decades to get a diagnosis’
Rachael Zimbler shares her struggles with Bardet-Biedl Syndrome, a rare genetic condition that led to her blindness and obesity, highlighting the challenges of obtaining a timely diagnosis.
‘Like a spelling mistake’: B.C. teen’s DNA ‘corrected’ to cure rare disease
A B.C. teenager, Ty Sperle, was successfully cured of chronic granulomatous disease through a groundbreaking medical procedure involving genetic correction.
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.
A genetic mutation unleashes a rare disease in Spain and there is no cure: what is fatal familial insomnia?
A genetic mutation is responsible for fatal familial insomnia, a rare neurodegenerative disease predominantly found in Spain, with no known cure and severe implications for those affected.
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.