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Gene therapy fails for Danish child treated for Sandhoff disease

Alissa Feldborg, a 3-year-old with an ultra rare genetic disease called Sandhoff, died this month after participating in a gene therapy trial.

United statesFrancis collinsThomas feldborgAlissa feldborgDaria rokinaRobert deutschUmass chanTerence flotteKaren weintraubDrug administrationNational institutes of healthTh chan school of medicineUniversity of massachusettsEaster mondayBaby fitzNational institutes

Every Cure to seek new uses for generic drugs to treat rare diseases

The new nonprofit Every Cure, backed by the Clinton Global Initiative, aims to identify generic drugs that could help people with rare diseases.

United statesRobert deutschDavid fajgenbaumGrant mitchellAlissa feldborgBill clintonBarbara goodmanPenn wharton schoolClinton global initiativeUniversity of pennsylvaniaEvery cureCures within reachEver cureWharton school

An experimental gene therapy was little Alissa s only hope Now, instead of certain death, she faces an uncertain future

An experimental gene therapy was little Alissa s only hope. Now, instead of certain death, she faces an uncertain future. Karen Weintraub, USA TODAY © Feldborg family photo Alissa Feldborg BOSTON Thomas Feldborg and Daria Rokina set off nearly every afternoon to explore this city. They leave from their hotel in the Charlestown neighborhood, pushing their baby carriage, some days heading deep into downtown, others choosing a path along the Charles River. Every few minutes, Rokina stops to peek inside and check on 16-month-old Alissa. She gently rubs Alissa s cheek and coos a few soothing words, making sure the little girl is warm enough in her yellow snowsuit and adjusting her sparkly unicorn earmuffs.

United statesUniversity of massachusettsAuburn universityCummings schoolCharles riverThomas feldborgFeldenkrais methodPavan cheruvuDaria rokinaMiguel sena estevesCynthia tifftFlorian eichlerIsaac kohaneDouglas martinMatty wilkinsonJoan horak

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