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“You Me Everything,” a novel about a single mom whose mother is diagnosed with Huntington’s disease, is helping to raise awareness of the condition. The story is also drawing attention to the struggles of patients and their loved ones. In writing the novel, British author Catherine Isaac sought…

A Rare Conditions Care Value (RCCV) program providing second opinions from experts for patients with rare diseases like Huntington’s disease was launched recently by two U.S. health management companies, Express Scripts and Pinnacle Care. The program, aptly named “Second Opinion,” offers another assessment regarding diagnosis and disease treatment from a specialist in the field,…

Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing the nearly three million Canadians with rare diseases.” So says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), a Toronto-based network representing 102 patient advocacy…

Arterial hypertension was linked to a later age of disease onset in Huntington’s patients in a study in Europe. The study, “Does arterial hypertension influence the onset of Huntington’s disease?” was published in the journal PLOS One. Previous research has shown an association between the age of onset…

As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, 9-year-old Jordan finally got the hug he wanted — as well as a kiss on the forehead. The video of…

Genetic causes behind Huntington’s disease may overlap with those behind rheumatoid arthritis, an unexpected finding that could potentially open the door for new therapeutics targeting both diseases, a study suggests. The study, “Comprehensive epigenetic landscape of rheumatoid arthritis fibroblast-like synoviocytes,” was published in the journal Nature Communications. Rheumatoid…

Should scientists have the right to edit the genes of future generations to eliminate hundreds, if not thousands, of potential rare diseases? Or should researchers restrict their use of genome editing to somatic cells, so that they don’t pass changes on to the next generation? What about stem-cell research, three-parent…

Apathy is linked to physical, cognitive, and behavioral impairments in patients with Huntington’s disease, a study shows. The study, “Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington’s Disease,” was published in The Journal of Neuropsychiatry and Clinical Neurosciences. Huntington’s disease is characterized by…

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…

Increasing evidence links a specific fat to Huntington’s disease, and it “merits more attention” as a “high priority” target for potential disease treatments, a review study reports. The study, “The S1P Axis: New Exciting Route for Treating Huntington’s Disease,” was published in the journal Trends in Pharmacological Sciences.