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The Arc and its advocates are welcoming the U.S. Congress’ decision to pass COVID-19-related economic stimulus legislation, which will extend access to Medicaid home and community-based services (HCBS) for people with intellectual and developmental disabilities (IDD). The $1.9 trillion American Rescue Plan Act of 2021, passed Tuesday and signed…

Note: This story was updated April 22, 2021, to clarify the collaboration between Yale and Taysha at the company’s request.  Taysha Gene Therapies has established a new research partnership with Yale University to advance its gene therapy program for neurodevelopmental disorders, which includes Rett syndrome, the company announced.

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…

A $200,000 Comcast NBCUniversal grant has been awarded to The Arc to increase access to educational resources for students of color and economically disadvantaged youngsters with intellectual and developmental disabilities (IDD), which can include Rett syndrome.

Researchers have identified a set of RNA molecules that are dysregulated in Rett syndrome and may be relevant biomarkers for the disorder. The study, “Unraveling Molecular Pathways Altered in MeCP2-Related Syndromes, in the Search for New Potential Avenues for Therapy,” was published in the journal…

Bruxism, also known as teeth grinding and jaw clenching, is the most common oral manifestation in patients with Rett syndrome, according to a small review of literature. The study, “Oral Manifestations of Rett Syndrome—A Systematic Review,” was published in the International Journal of Environmental Research and Public…

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 how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…

Impairments in the cerebellum — a brain region responsible for controlling balance and movement coordination — contribute, in part, to motor impairments associated with Rett syndrome, a mouse study has found. These findings highlight the importance of understanding which brain areas contribute to the onset of specific symptoms associated…

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 presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

The United States Patent and Trademark Office (USPTO) has issued an allowance for a patent submitted by DiamiR for methods the company developed that use microRNA (miRNA) as biomarkers of Rett syndrome and other neurodevelopmental diseases.  Notices of Allowance are issued by…