The kickoff meeting for a new dedicated worldwide consortium focused on Huntington’s disease took place on November 6 and 7 in Silver Spring, Maryland. The goal of this meeting was to gather relevant stakeholders to align on the purpose and potential opportunities which could benefit from precompetitive collaboration for accelerating HD therapeutics.
· The Kickoff of the HDRSC brought together experts from around the world to identify opportunities for collaboration.
· Meeting presenters and panelists underscored the importance of data sharing and collaboration in advancing treatments for HD.
· More than 90 colleagues participated in the HD-RSC kickoff meeting
Charles Sabine, Patient Advocate
Emmy-award winning TV journalist, Charles Sabine, worked for the US network NBC news for 26 years.
That career took him—via twelve wars, six revolutions, and four earthquakes—to most of the news events of Europe, the Middle East, Africa, and Asia since the early 1980s. There, he learned first-hand the extraordinary limits that the human spirit is capable of reaching, in the face of tragedy inflicted by both nature and mankind.
In 2008, he decided to put the lessons of those experiences to a different use, when he became a pioneering spokesman for freedom of scientific research, and sufferers of degenerative brain illnesses—in particular, Huntington’s disease, which has ravaged his family.
That role has led to Sabine speaking at prestigious venues across the world: among them, the European and British parliaments, the Royal Institution in London, and the World Congress on Freedom of Scientific Research.
