FNIH Launches Partnership to Accelerate ALS Diagnosis and Treatment & More — This Week in RARE Daily

May 23, 2024

This Week in RARE Daily is a feature from Global Genes where you can get a quick rundown of the top 5 headlines in the rare disease space from our editorial staff. Here are top stories from this past week, May 17 – 23, 2024:

FNIH Launches Partnership to Accelerate ALS Diagnosis and Treatment
The Foundation for the National Institutes of Health launched a public-private partnership to build the largest data source to identify biomarkers and clinical outcome assessments that would allow earlier diagnosis and accelerated drug development for those with for amyotrophic lateral sclerosis.
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Biogen Acquires Human Immunology Biosciences, Bolstering Late-Stage Pipeline
Biogen and Human Immunology Biosciences, known as HI-Bio, have entered into a definitive agreement under which Biogen has agreed to acquire the privately held company for $1.15 billion upfront and up to $650 million in potential milestone payments.
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FDNA and Genome Medical Partner to Improve Access to Diagnostic Services for Kids in Underserved Areas
Digital health company FDNA and telehealth provider Genome Medical have partnered to shorten the diagnostic odyssey for children with developmental disorders from an average of five years to a few months.
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FDA Removes Partial Clinical Hold on Larimar’s Friedreich’s Ataxia Program
has removed the partial clinical hold previously placed on Larimar Therapeutics’ nomlabofusp clinical program for the treatment of patients with Friedreich’s ataxia, an ultra-rare, inherited neurodegenerative disorder that is typically diagnosed during adolescence.
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CHEO Developed AI Algorithm Leads to Rare Disease Diagnosis
The CHEO Research Institute has developed the ThinkRare algorithm to use artificial intelligence to identify children who may have an undiagnosed rare genetic disease and refers them for genetic testing in the hopes of ending their diagnostic odyssey.
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