by Peter Ciszewski | Feb 27, 2019
Dean Suhr, President, MLD Foundation and Chairman, Patient Advocacy Advisory Board RARE Project, discusses Rare Disease Day.
by Peter Ciszewski | Feb 27, 2019
Steve Silvestri, Director of Public Policy at the EveryLife Foundation for Rare Diseases, discusses the role of advocates in lobbying Congress and the 2019 Legislative Conference Agenda held February 25, 2019 at the Ronald Reagan Building and International...
by Peter Ciszewski | Feb 23, 2019
James C. Greenwood, President and CEO of the Biotechnology Innovation Organization (BIO) discusses the upcoming 2019 BIO International Conference to be held June 3-6 in Philadelphia, PA. BIO represents 1,000 biotechnology companies, academic institutions, state...
by Peter Ciszewski | Feb 22, 2019
The United Nations’ non-governmental organization (NGO) Committee for Rare Disease held its Rare Disease Day event on February 21, 2019 at the United Nations Headquarters in New York City. The event included a who’s who of the international rare disease committee...
by Peter Ciszewski | Feb 21, 2019
Ron Philip, Chief Commercial Officer of Spark Therapeutics, discusses biallelic RPE65 mutation-associated retinal dystrophy, a rare retinal disorder. The RPE65 gene provides instructions for making a protein that is essential for normal vision. The RPE65...
