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July 10, 2019 News by Hal Foster, PhD

Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

The challenges Vesna Aleksovska faced when she decided a decade ago to help fellow Macedonians with rare diseases were so daunting, they would have scared off all but the most determined. At that time, few doctors in the developing country of 2 million — now called North Macedonia — had…

March 19, 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,…

March 12, 2018 News by Larry Luxner

Rare Disease Groups Welcome FDA’s Embrace of ‘Real World’ Data in Clinical Trials

In his 10 months on the job, Commissioner Scott Gottlieb of the U.S. Food and Drug Administration is earning praise for his efforts to make clinical trials for new therapies more flexible and responsive to the needs of rare disease patients. From cystic fibrosis to epidermolysis bullosa, the FDA…

Recent Posts

  • New Mouse Model With Slower Alport Progression May Lead to Better Understanding, Study Says
  • Chinook Acquires Global Rights to Develop Atrasentan for Alport, Other Kidney Diseases
  • Gene Therapy Repairs Mutations in Kidney Cells from Alport Patients, Study Shows
  • US Kidney Disease Data Points to Need for Early Detection and Better Awareness, AKF Says
  • Reata and Invitae Partner to Offer Genetic Testing and Counseling for Chronic Kidney Disease
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