News

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 disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…

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 seeking out and supporting novel treatments for complex and rare diseases,” Robert McQuade, PhD, president of MSRD…

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 with two feeding tube experts at the ALS Center of Excellence at Hennepin Healthcare, in Minneapolis, Minnesota,…

Maltese people with amyotrophic lateral sclerosis (ALS) do not exhibit mutations in the genes commonly associated with the condition, a study found. Instead, their disease-causing mutations are found in genes rarely associated with the condition in Europeans. The study, “…

With a new version of a low-cost eye-tracking system called EyeWriter, artists and others who are paralyzed due to amyotrophic lateral sclerosis (ALS) can more accurately draw and create images using only their eyes. The latest EyeWriter 2.0 software improves the system’s accuracy and now also allows the…

BrainStorm Cell Therapeutics met with U.S. Food and Drug Administration (FDA) officials regarding its plans for a semi-automatic manufacturing process for NurOwn, the company’s investigational cell-based therapy for amyotrophic lateral sclerosis (ALS). Discussion at the meeting — formally called a type C meeting — covered issues that…

Cytokinetics awarded two amyotrophic lateral sclerosis (ALS) patient advocacy organizations grants worth $20,000, in recognition of their efforts to support their disease communities through communications, awareness, and outreach. The grants, part of the Cytokinetics’ annual Communications Fellowship Grant program, aid projects that reach underserved populations, provide assistive…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Stretchable electronics that are “intrinsically” stretchable — meaning they have tissue-like mechanical properties that integrate sensory devices with human skin — can better detect signals from a patient’s body than current, more rigid sensors, a study suggests. For now, its researchers are looking into a design for these electronics as a…

Note: This story was updated Feb. 9, 2021, to clarify details surrounding the grant Chronic Care Collaborative received from Adira.  Greg Smiley’s world changed abruptly in 2013. He was racing down a mountain road on an outback cycling trip in South Africa, when he hit an obstruction in the road…