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February 25, 2021February 25, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

News, syndicated

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 25, 2021February 25, 2021

I AM ALS ‘Playbook’ Aims to Foster Patient Advocacy Groups

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I AM ALS, a nonprofit working for people affected by amyotrophic lateral sclerosis (ALS), is offering a guide to help others who want to follow in its footsteps — creating a ... Read more

February 24, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

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Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 24, 2021February 24, 2021

FDA, in Initial Review of NurOwn for ALS, Finds Data Lacking

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Existing safety and effectiveness data from a Phase 3 clinical trial of NurOwn — an investigational cell-based therapy for amyotrophic lateral sclerosis (ALS) — are not sufficient to support the therapy’s approval, ... Read more

February 23, 2021February 23, 2021

Doddie Foundation Gives £300,000 to Help MND Patients in UK

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The My Name’5 Doddie Foundation has donated a total of £300,000 (about $420,600) to two U.K. nonprofits to support people living with motor neuron diseases (MND), including amyotrophic lateral sclerosis (ALS). ... Read more

February 22, 2021February 22, 2021

Higher Suicide Risk Found for US Veterans With ALS

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Military veterans with amyotrophic lateral sclerosis (ALS) are nearly four times as likely to commit suicide as vets without the progressive neurological disease, according to a recent study. This finding suggests ... Read more

February 19, 2021February 19, 2021

Moderate Physical Activity May Slow Muscle Deterioration

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Moderate physical activity may slow muscle deterioration associated with the progression of amyotrophic lateral sclerosis (ALS), improving patients’ ability to perform daily life activities, a review study has found. This ... Read more

February 18, 2021February 18, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

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People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 18, 2021February 18, 2021

Otsuka, Eikonizo Collaborating on ALS, Rare Disease Therapies

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The McQuade Center for Strategic Research and Development (MSRD) and Eikonizo Therapeutics have entered a collaboration to advance potential therapies for rare diseases, including amyotrophic lateral sclerosis (ALS). “We are dedicated to ... Read more

February 17, 2021February 17, 2021

ALS Association Emphasizes Importance of Feeding Tubes

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To commemorate Feeding Tube Awareness Week, the ALS Association recently highlighted the benefits of feeding tubes in the lives of people with amyotrophic lateral sclerosis (ALS). The association recalled a previous interview ... Read more

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