Showing 1 to 12 of 41 results
Rare Genetic Disorder DRPLA Cluster in South Wales
A cluster of people in south Wales are affected by Dentatorubral-pallidoluysian atrophy (DRPLA), a rare, inherited neurological disorder with no known cure, impacting families and raising concerns about early diagnosis and treatment.
Rare Genetic Disorder DRPLA Cluster in South Wales
A cluster of people in south Wales are affected by Dentatorubral-pallidoluysian atrophy (DRPLA), a rare, inherited neurological disorder with no known cure, impacting families and raising concerns about early diagnosis and treatment.
Progress
24% Bias Score
Rare Disease Misdiagnosis Leads to Organ Failure, PTSD
Charlotte Chapman-Hart, a 32-year-old from Nottinghamshire with rare diseases Chiari malformation type 1 and syringomyelia, suffered severe weight loss and organ failure due to a medication side effect, was misdiagnosed with an eating disorder, and experienced inadequate hospital care, leading to PT...
Rare Disease Misdiagnosis Leads to Organ Failure, PTSD
Charlotte Chapman-Hart, a 32-year-old from Nottinghamshire with rare diseases Chiari malformation type 1 and syringomyelia, suffered severe weight loss and organ failure due to a medication side effect, was misdiagnosed with an eating disorder, and experienced inadequate hospital care, leading to PT...
Progress
40% Bias Score
Misdiagnosed Morning Sickness Leads to Cancer Diagnosis and Pregnancy Termination
A pregnant woman in the UK was diagnosed with a rare type of cancer, pre-mediastinal B-cell non-Hodgkin's lymphoma, after initially mistaking her symptoms for morning sickness; this led to the heartbreaking decision to terminate her 15-week pregnancy to undergo immediate treatment.
Misdiagnosed Morning Sickness Leads to Cancer Diagnosis and Pregnancy Termination
A pregnant woman in the UK was diagnosed with a rare type of cancer, pre-mediastinal B-cell non-Hodgkin's lymphoma, after initially mistaking her symptoms for morning sickness; this led to the heartbreaking decision to terminate her 15-week pregnancy to undergo immediate treatment.
Progress
48% Bias Score
Misdiagnosis Delays Treatment for Girl with Fatal Genetic Illness
Three-year-old Katie Hughes was misdiagnosed with a fever, delaying diagnosis of fatal CLN2 Batten Disease; her parents now race against time to secure £500,000 annual treatment before the NHS 2025 deadline.
Misdiagnosis Delays Treatment for Girl with Fatal Genetic Illness
Three-year-old Katie Hughes was misdiagnosed with a fever, delaying diagnosis of fatal CLN2 Batten Disease; her parents now race against time to secure £500,000 annual treatment before the NHS 2025 deadline.
Progress
52% Bias Score
Sixteen-Year-Old 'Miracle Baby' Dies After Battling Rare Genetic Disorder
Sarah Innes Mason, a 'miracle baby' born without a pancreas, passed away at 16 after a sudden respiratory failure, highlighting the unpredictable nature of severe multi-organ conditions and the emotional toll on families.
Sixteen-Year-Old 'Miracle Baby' Dies After Battling Rare Genetic Disorder
Sarah Innes Mason, a 'miracle baby' born without a pancreas, passed away at 16 after a sudden respiratory failure, highlighting the unpredictable nature of severe multi-organ conditions and the emotional toll on families.
Progress
40% Bias Score
Beijing Art Exhibit Raises Awareness of Rare Joint Disorder
An art exhibition in Beijing's Xuannan Bookstore from July 4-6 raised awareness of tenosynovial giant cell tumor, a rare joint disorder affecting 60,000 people annually in China, through artwork created collaboratively by patients, families, medical professionals, and artists, organized by the China...
Beijing Art Exhibit Raises Awareness of Rare Joint Disorder
An art exhibition in Beijing's Xuannan Bookstore from July 4-6 raised awareness of tenosynovial giant cell tumor, a rare joint disorder affecting 60,000 people annually in China, through artwork created collaboratively by patients, families, medical professionals, and artists, organized by the China...
Progress
24% Bias Score
Groomsmen's Tribute Walk Honors Nurse Who Died Before Wedding
Two groomsmen completed a 130-mile walk around Anglesey to honor their friend Robyn Parry, a nurse who died of Diamond Blackfan Anaemia before his wedding, raising money for the DBA Support Group UK.
Groomsmen's Tribute Walk Honors Nurse Who Died Before Wedding
Two groomsmen completed a 130-mile walk around Anglesey to honor their friend Robyn Parry, a nurse who died of Diamond Blackfan Anaemia before his wedding, raising money for the DBA Support Group UK.
Progress
20% Bias Score
Girl Survives Rare Infection from Minor Head Wound
A seven-year-old girl from Pyatigorsk, Russia, developed anaerobic facial phlegmon, a rare infection (one in a million), from a head wound sustained during a family trip to Arkhyz. Emergency surgery and treatment saved her life.
Girl Survives Rare Infection from Minor Head Wound
A seven-year-old girl from Pyatigorsk, Russia, developed anaerobic facial phlegmon, a rare infection (one in a million), from a head wound sustained during a family trip to Arkhyz. Emergency surgery and treatment saved her life.
Progress
40% Bias Score
Newborn's Stiffness Leads to Devastating Rare Disease Diagnosis
Six-month-old Madeline Norton from Massapequa, New York, received a devastating diagnosis of Pantothenate Kinase-Associated Neurodegeneration (PKAN), a rare genetic disorder giving her a life expectancy of only 10-15 years; her only initial symptom was stiffness.
Newborn's Stiffness Leads to Devastating Rare Disease Diagnosis
Six-month-old Madeline Norton from Massapequa, New York, received a devastating diagnosis of Pantothenate Kinase-Associated Neurodegeneration (PKAN), a rare genetic disorder giving her a life expectancy of only 10-15 years; her only initial symptom was stiffness.
Progress
52% Bias Score
American's Self-Surgery Highlights Medical Self-Reliance Risks
An American, Doug Lindsay, suffering from a rare disease, researched and proposed a novel surgery that cured him and led to his advisory role at Harvard, highlighting both the benefits of self-reliance and the risks of medical self-treatment.
American's Self-Surgery Highlights Medical Self-Reliance Risks
An American, Doug Lindsay, suffering from a rare disease, researched and proposed a novel surgery that cured him and led to his advisory role at Harvard, highlighting both the benefits of self-reliance and the risks of medical self-treatment.
Progress
44% Bias Score
Parents' Grief Fuels Mitochondrial Disease Research Breakthrough
Lily, diagnosed with mitochondrial disease, died at six months old, prompting her parents to establish The Lily Foundation, which has raised over £11 million and developed a routine gene test for the disease.
Parents' Grief Fuels Mitochondrial Disease Research Breakthrough
Lily, diagnosed with mitochondrial disease, died at six months old, prompting her parents to establish The Lily Foundation, which has raised over £11 million and developed a routine gene test for the disease.
Progress
20% Bias Score
Massive 76.5-Pound Tumor Successfully Removed from Indian Man
Indian doctors successfully removed a 76.5-pound cancerous tumor from 27-year-old Mohd Salman's leg after a six-hour operation on June 9, 2025, restoring his mobility after five years of growth.
Massive 76.5-Pound Tumor Successfully Removed from Indian Man
Indian doctors successfully removed a 76.5-pound cancerous tumor from 27-year-old Mohd Salman's leg after a six-hour operation on June 9, 2025, restoring his mobility after five years of growth.
Progress
36% Bias Score
Showing 1 to 12 of 41 results