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August 28, 2019 News by Larry Luxner

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such issues during a recent talk at the New York Genome Center. Minssen directs the Center for Advanced Studies in…

March 16, 2018 News by Larry Luxner

Genome Sequencing and Its Clinical Potential Focus of NYC Rare Disease Day Event

Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes that cause at least half of the 7,000 rare diseases currently known — was the focus of a discussion by three top New York geneticists. The Feb. 28 conference,…

February 28, 2018 News by Larry Luxner

Bionews to Cover 3 Rare Disease Day Events, Including NIH Conference

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

Recent Posts

  • Celebrating the qualities of a good caregiver and father
  • Orladeyo approved for reimbursement in the Netherlands
  • What I learned from my first experience with rescue medication
  • Sebetralstat quickly stops HAE attack progression in study
  • Diagnosis, treatment, can thwart blocked airways from HAE swelling


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