Latest News

Stay informed of current rare disease news and TRNDS updates.

  • Gene Silencing Shows Promise for Treating Two Fatal Neurological Disorders
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  • University of Rochester Neurology Celebrates 50th Anniversary
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  • International Consensus Addresses Research Bottlenecks to Diagnose Rare Genetic Diseases
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  • TRNDS Interview with Ira Shoulson
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  • Prepare for the Digital Health Revolution
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  • BREAKING: ALS Treatment gets FDA Approval
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  • TRNDS Interview with Dave Jacob
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  • Here’s What Your Future Doctor Visits Could Look Like
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  • PatientsLikeMe Partners with Shire Pharmaceuticals
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  • Interview with Amanda Christini, Blackfynn
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  • AAN 2017; Spinraza Data for SMA Continues to Impress
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  • FDA Approves First Treatment for a Form of Batten Disease
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  • How Multiple Platform Marketing Spread Rare Disease Awareness
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  • TRNDS Interviews Maria Picone
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  • Biotechs take lead in a new push against neurological disorders
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  • MS PATHS: Harnessing Real-Time Patient Data to Reshape MS Care and Research
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  • Interview with Jane Rhodes
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  • The partnership of patient advocacy groups & clinical investigators in the rare diseases clinical research network
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  • The Importance of the Patient Voice
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  • Exclusive Interview with Wendy White
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  • Ethical Issues of Research Recruiting on Social Media
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  • Ethics & Privacy Implications
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  • Rare Diseases: Meeting the Unique Challenges of Orphan Drug Development
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  • The Benefits of Digital Health for Rare Disease Research
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  • Newest ResearchKit Study Focuses on a Rare Disease
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  • Luke Gelinas Interview
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  • Seeker Health Interview
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