Showing 13 to 24 of 41 results
Bradford 10k Run Honors Daughter Lost to Rare Epilepsy
Cheryl Murphy from Pudsey is running the Bradford 10k on Sunday with friends and family to raise awareness and funds for hemiplegia Hemiconvulsion syndrome, a rare epilepsy that caused her two-year-old daughter Edie's death in 2015, after an event which the family believe could not have been predict...
Bradford 10k Run Honors Daughter Lost to Rare Epilepsy
Cheryl Murphy from Pudsey is running the Bradford 10k on Sunday with friends and family to raise awareness and funds for hemiplegia Hemiconvulsion syndrome, a rare epilepsy that caused her two-year-old daughter Edie's death in 2015, after an event which the family believe could not have been predict...
Progress
20% Bias Score
Woman with Terminal Cancer Completes 90km Bike Ride
Rebecca Hind, 39, from Cumbria, is battling terminal appendix cancer (pseudomyxoma peritonei) after multiple surgeries and chemotherapy; despite this, she remains active, recently completing a 90km charity bike ride.
Woman with Terminal Cancer Completes 90km Bike Ride
Rebecca Hind, 39, from Cumbria, is battling terminal appendix cancer (pseudomyxoma peritonei) after multiple surgeries and chemotherapy; despite this, she remains active, recently completing a 90km charity bike ride.
Progress
36% Bias Score
Tanzanian Woman's Decade-Long Battle with Lupus Highlights Diagnostic Challenges
A Tanzanian woman, Hajjrat Mohammed, shares her arduous journey battling Lupus, a debilitating autoimmune disease, highlighting diagnostic challenges and the urgent need for increased awareness and support in Tanzania.
Tanzanian Woman's Decade-Long Battle with Lupus Highlights Diagnostic Challenges
A Tanzanian woman, Hajjrat Mohammed, shares her arduous journey battling Lupus, a debilitating autoimmune disease, highlighting diagnostic challenges and the urgent need for increased awareness and support in Tanzania.
Progress
48% Bias Score
Personalized Gene Editing Shows Promise in Treating Rare Metabolic Disorder
A US baby, KJ, diagnosed with the ultra-rare CPS1 deficiency, received a groundbreaking personalized gene-editing therapy using base editors, showing promising results and offering a new hope for treating such rare metabolic disorders. The treatment was delivered in two doses via lipid nanoparticles...
Personalized Gene Editing Shows Promise in Treating Rare Metabolic Disorder
A US baby, KJ, diagnosed with the ultra-rare CPS1 deficiency, received a groundbreaking personalized gene-editing therapy using base editors, showing promising results and offering a new hope for treating such rare metabolic disorders. The treatment was delivered in two doses via lipid nanoparticles...
Progress
40% Bias Score
Rare Genetic Disorder Spoan Syndrome Discovered in Isolated Brazilian Town
Biologist Silvana Santos discovered Spoan syndrome, a previously unknown genetic disorder affecting the nervous system, in the isolated Brazilian town of Serrinha dos Pintos, where high rates of cousin marriage significantly increased its prevalence.
Rare Genetic Disorder Spoan Syndrome Discovered in Isolated Brazilian Town
Biologist Silvana Santos discovered Spoan syndrome, a previously unknown genetic disorder affecting the nervous system, in the isolated Brazilian town of Serrinha dos Pintos, where high rates of cousin marriage significantly increased its prevalence.
Progress
40% Bias Score
FDA Approves First Gene Therapy for RDEB, Showcasing Innovative Funding Model
The FDA approved ZEVASKYN, the first autologous cell-based gene therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB), a significant advancement driven by EB Research Partnership's innovative venture philanthropy model, offering hope to 500,000 people globally.
FDA Approves First Gene Therapy for RDEB, Showcasing Innovative Funding Model
The FDA approved ZEVASKYN, the first autologous cell-based gene therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB), a significant advancement driven by EB Research Partnership's innovative venture philanthropy model, offering hope to 500,000 people globally.
Progress
52% Bias Score
Birth Trauma Leads to Extensive Rehabilitation Needs for Infant Matvey
Matvey, born on December 31st, 2023, suffered birth trauma from a vacuum extraction leading to anophthalmia, hearing impairment, and hypotonia, requiring extensive and costly rehabilitation.
Birth Trauma Leads to Extensive Rehabilitation Needs for Infant Matvey
Matvey, born on December 31st, 2023, suffered birth trauma from a vacuum extraction leading to anophthalmia, hearing impairment, and hypotonia, requiring extensive and costly rehabilitation.
Progress
52% Bias Score
Woman's Near-Fatal Reaction to Common Antibiotic Highlights Rare Syndrome
A 27-year-old woman, Elle Dunn, suffered organ failure from a severe reaction to the antibiotic minocycline, prescribed for acne at age 15, highlighting the rare but potentially fatal Drug Reaction with Eosinophilia and Systemic Symptoms (DReSS) syndrome affecting approximately 1 in 10,000 patients,...
Woman's Near-Fatal Reaction to Common Antibiotic Highlights Rare Syndrome
A 27-year-old woman, Elle Dunn, suffered organ failure from a severe reaction to the antibiotic minocycline, prescribed for acne at age 15, highlighting the rare but potentially fatal Drug Reaction with Eosinophilia and Systemic Symptoms (DReSS) syndrome affecting approximately 1 in 10,000 patients,...
Progress
36% Bias Score
Gene Editing Successfully Treats Baby's Life-Threatening Genetic Disorder
Doctors successfully used a personalized gene-editing therapy to treat baby KJ Muldoon's life-threatening genetic disorder, carbamoyl phosphate synthetase 1 (CPS1), showing potential for treating numerous rare diseases previously untreatable.
Gene Editing Successfully Treats Baby's Life-Threatening Genetic Disorder
Doctors successfully used a personalized gene-editing therapy to treat baby KJ Muldoon's life-threatening genetic disorder, carbamoyl phosphate synthetase 1 (CPS1), showing potential for treating numerous rare diseases previously untreatable.
Progress
40% Bias Score
Successful Gene Editing Therapy Treats Rare Genetic Disorder in Baby
A baby with CPS1 deficiency, a rare genetic disease affecting approximately one in a million infants, successfully underwent a custom gene-editing therapy using base editing, resulting in significant improvement in his health within months.
Successful Gene Editing Therapy Treats Rare Genetic Disorder in Baby
A baby with CPS1 deficiency, a rare genetic disease affecting approximately one in a million infants, successfully underwent a custom gene-editing therapy using base editing, resulting in significant improvement in his health within months.
Progress
40% Bias Score
Newly Discovered Genetic Disorder Impacts Isolated Brazilian Town
In Serrinha dos Pintos, Brazil, geneticist Silvana Santos discovered SPOAN syndrome, a genetic disorder causing progressive muscle weakness and affecting many due to high rates of cousin marriage in this isolated community.
Newly Discovered Genetic Disorder Impacts Isolated Brazilian Town
In Serrinha dos Pintos, Brazil, geneticist Silvana Santos discovered SPOAN syndrome, a genetic disorder causing progressive muscle weakness and affecting many due to high rates of cousin marriage in this isolated community.
Progress
28% Bias Score
Rare Guillain-Barré Syndrome Variant Causes Prolonged Paralysis
Speech pathologist Vanessa Abraham's 2019 sudden paralysis and respiratory failure led to a four-month diagnostic odyssey before revealing a rare pharyngeal-cervical-brachial variant of Guillain-Barré syndrome; her protracted recovery highlights challenges in diagnosing and treating such rare neurol...
Rare Guillain-Barré Syndrome Variant Causes Prolonged Paralysis
Speech pathologist Vanessa Abraham's 2019 sudden paralysis and respiratory failure led to a four-month diagnostic odyssey before revealing a rare pharyngeal-cervical-brachial variant of Guillain-Barré syndrome; her protracted recovery highlights challenges in diagnosing and treating such rare neurol...
Progress
16% Bias Score
Showing 13 to 24 of 41 results