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Medical devices for rare diseases: the unmet need

Patients with rare diseases often lack medical devices suitable for their condition, a problem that a new working group aims to address.

Abi millarAnneliene jonkerUniversity of twenteDevice networkInterdisciplinary scientific committeeEuropean unionInternational rare diseases research consortium irdiTherapies scientific committeeRare diseaseOrphan drugs actInternational rare diseases research consortiumMedical device networkAutomated sample preparationBiological samplesLife sciencesPlastic components

Rare Disease Day – looking to the future with hope

- PMLiVE

Amanda henkelRare disease company coalitionInternational rare diseases research consortium irdiEuropean commissionUs national institutes of healthRare disease dayGlobal geneCure rare diseaseRich horganOrphanet journalRare diseasesInternational rare diseases research consortiumRare diseaseOrphan drugsRare disease cures accelerator dataAnalytics platform

Looking through a new lens: insights into patient participation in rare disease research

Orphanet Journal of Rare Diseases is proud to present this blog article by Meagan Collins, a runner-up entry in beacon for rare diseases and Medics4RareDiseases' "Student Voice" contest.

David fajgenbaumCollaborative networkParticipant panelCuregrin foundationInternational rare diseases research consortiumGlobal alliance for genomicsDigital research advisory groupNational health serviceGenomics englandResearch advisoryDrug administration approvedN methyld aspartateCollaborative network approachGlobal alliance

Solving the puzzle of rare diseases through international collaboration

Solving the puzzle of rare diseases through international collaboration
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United statesDavid pearceMatchmaker exchangeInternational rare diseases research consortiumInternational rare diseases research consortium irdiEuropean commissionGlobal alliance for genomicsUs national institutes of healthResearch impactChair dr luciaLucia monacoStrategic analysisFondazione telethonNorth americaSouth americaGlobal alliance

Sanford s Pearce Names Chair of IRDiRC

Sanford s Pearce Names Chair of IRDiRC
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New yorkUnited statesUniversity of rochesterDavid pearceUniversity of bathInternational rare diseases research consortiumInternational rare diseases research consortium irdiSanford healthUniversity of wolverhamptonInternational rare diseases researchWolverhampton englandPostdoctoral fellowshipRare diseases