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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

Millions Suffer From Untreatable Rare Diseases While Medical Costs Skyrocket

HERNDON, VA (PRWEB) December 12, 2022 The economic burden of rare diseases has been vastly underestimated. A retrospective study of medical and insurance

United statesIndia generalSouth koreaHarsha rajasimhaCorporate allianceRare disease special interest groupIndousrare corporate allianceNational policy for rare diseasesValue in healthSizeable collective burden and offering solutionsA health economics value frameworkWorld economic forumNational policyRare diseasesDrug controller generalOrphanet journal

What is a Rare Disease?

Any unusual life-altering complication of the human body affecting a small number of people is classified as a rare disease (RD).

United statesVan meelEmily hendersonEuropean reference networks ernsInternational society for pharmacoeconomicsTranslational sciencesRare disease special interest groupRare diseases registry program radaEuropean unionOutcomes research rare disease special interest groupNational centerTelangiectasia international registryOutcomes researchRare diseases clinical research networkHealth technology assessment of rare disease technologiesEuropean medicines agency

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