Charles Moore,  —

Abeona Therapeutics will host an inaugural Research and Development (R&D) Day in New York City in October, briefing investors on its progress in developing gene therapies for rare diseases, including two for Batten disease. The R&D Day program and video webcast, set for on Wednesday, Oct. 11, will begin…

The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease was launched in 2015 by Hollywood producer Gordon Gray and his wife Kristen to advocate and raise funds for research to find a cure for Batten disease. The foundation also supports patient therapies and the purchase of equipment crucial…

Gov. Tom Wolf Pennsylvania  Gov. Tom Wolf recently signed House Bill 239, establishing the Rare Disease Advisory Council. The bill, was introduced May 24 by state Rep. Marcy Toepel, R-Montgomery County, who said the bill is an outgrowth of contact with people in her district who…