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Rare Diseases and International Collaboration: Sharing Knowledge for Global Impact

Rare diseases are medical conditions that affect a small percentage of the population

United statesLily ramseySpanish federation of rare diseasesOutcomes research rare disease special interest groupEuropean parliamentEuropean unionCenters for mendelian genomicsHealth work programmeEuropean reference networks ernsChinese organization for rare disordersOutcomes researchDiseases network internationalRare disease special interest groupInternational society for pharmacoeconomicsRare diseases clinical research networkEuropean union horizon

Interview: The processes and difficulties of working within rare diseases

OSP was delighted to speak to Galina Nesterova, executive medical director at the Rare Disease & Pediatrics Center of Excellence, and Susan McKune, vice president of pediatrics and clinical pharmacology both within medical science and strategy at PPD, part of Thermo Fisher. They answered some pertinent questions surrounding rare diseases.

Cpath rare disease clinical outcome assessment consortiumInternational rare diseases research consortium irdiInternational rare diseases research consortiumBreakthrough therapyFast trackOrphan drug designationPrescription drug user feeRare pediatric diseasesPriority review voucherBoth centerDrug evaluationBiologics evaluationRare diseasePreclinical researchClinical developmentAtient centricity

Why the evolution of patient advocacy organizations means better data for your rare disease trial

BioPharma

National organization for rare disordersInternational rare diseases research consortium irdiTherapeutic strategy leadRare diseaseWorldwide clinical trialsJuliane millsNational organizationRare disordersInternational rare diseases research consortiumClinical trials

Shedding light on rare diseases: open data and model organisms

Shedding light on rare diseases: open data and model organisms
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Western australiaUnited kingdomMelissa haendelKaren arnottGareth baynamRare care centreInterdisciplinary scientific committeeMonarch initiativeUniversity of colorado anschutz medical campusEuropean commissionDisease programmeNational health serviceWorld health organisationEuropean joint programme on rare diseasesInternational mouse phenotyping consortiumInternational rare diseases research consortium

Rare Diseases Need Not Be Neglected Anymore

Rare Diseases Need Not Be Neglected Anymore

Tamil naduUttar pradeshRamaiah muthyalaNidan kendrasSanjiv dasSheela nampoothiriRuchi sogarwalIndian organisation for rare diseasesDepartment of pediatric geneticsInternational rare diseases research consortium irdiMinistry of healthIndia university grants commissionAmrita instituteInternational collaborations on rare diseasesRare diseases national consortiumPublic affairs