First Edition BOGP (0) Second Edition BOGP (0) Third Edition BOGP (10)
Australia (1) Canada (1) Germany (2) Spain (1) United Kingdom (3) Norway (1) United States (2)
Access Advocacy (policy advocacy, lobbying) Care Delivery/ Care pathway Education (awareness, health promotion) Gap analysis Organization / System Development Policy Research Other
Musculoskeletal/Multiple Sclerosis (MS) (1) Across all conditions/Other (1) Neurology/Parkinson's Disease (1)
Academic Medical Center/Hospital/Practice (3) Biotech Company (0) Foundation (0) Government (0) Health technology Assessment (HTA) body (0) NGO (0) Insurance Company (0) Pharmaceutical, Biotech, Medical Device Company (0) Medical Device Company (0) Private Public Partnership (0) Patient Advocacy Organization (4) Regulatory Body (0) Pharmaceutical Company (9) Research or Technical Organisation (0) Research Funder (0) Research Institution (0) Start Up (3) Think Tank (0) Other (4)
Patients Patient organisation Healthcare professionals Policymakers Regulators Payers (usually governmental or public bodies, reimbursement) Health Technology Assessment (HTA) bodies Pharmaceutical companies or industry (incl. Medical device and biotech companies) Researchers (investigators and academic researchers) Research funders Other (please specify)
Shared purpose Respect and accessibility Representativeness of stakeholders Roles and responsibilities Capacity and capabilities for engagement Transparency in communication and documentation Continuity and sustainability
Research and discovery Preclinical Clinical study phase I Clinical study phase II Clinical study phase III Regulatory Review & Approval Health Technology Assessment (HTA) activities Post marketing
Education (awareness, health promotion) Start Up (3)
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A sickle cell community built by the community for the community

rareLife solutions

United States

Currently underway

  Patients and community feedback on PLSs (Plain Language Summaries)

GlaxoSmithKline, ViiV Healthcare

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