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Rare Disease Clinical Trials: Site, Advocate and Technology Insights, Upcoming Webinar Hosted by Xtalks

Toronto, ON (PRWEB) August 31, 2022 Rare disease clinical trials are challenging on many levels, from identifying eligible patients, to making it

United kingdomFabian sandovalDaniel defabioAndrea valenteEmerson clinical research instituteCommunity engagementHoneycomb worldwide incTechnology insightsRare disease film festivalGlobal genesRare disease clinical trialsLife sciencePress release

Tell Your Story: Daniel DeFabioRare Dad, Filmmaker, Advocate

Global Genes staff member Daniel DeFabio shares his why - why he became involved in the rare community after his son was diagnosed with Menkes disease.

New yorkUnited statesDaniel lucas defabioDaniel defabioCommunity engagement for global genesMenkes foundationAmerican cinematographerFor danielPatient advocacy summitRare disease filmRare disease film festivalGlobal genesCommunity engagement

Panel: Stakeholder Collaborations Essential to Making Things Happen in Rare Disease Space

Patients and patient organizations, which have detailed insights in the natural history of a rare disease, should be integral, too.

United statesMichele rheeJocelyn duffKatherine beaversonBo bigelowClinical trials transformation initiativeApellis pharmaceuticalsPatient focused medicines developmentRare diseaseBiotech week bostonRare disease film festivalJulia carpenter conlinFocused medicines developmentTakeholder collaborations essential to making things happen in rare disease space

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