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Collaborative Rare Disease Advocacy for Spinal Muscular Atrophy

Examples

A project to enhance advocacy efforts for Spinal Muscular Atrophy through collaboration between patient groups and researchers.

Description

Advocacy is key for Spinal Muscular Atrophy patients. This project aims to strengthen advocacy through collaboration. The Spinal Muscular Atrophy Association supports advocacy efforts for Spinal Muscular Atrophy patients. Dr. Patrick Allen, a specialist in rare disease advocacy, leads this project. 

Objectives

Strengthen advocacy for Spinal Muscular Atrophy
  • Develop advocacy strategies
  • Collaborate with researchers
  • Implement advocacy campaigns

Project scope

  • Advocacy strategy development
  • Research collaboration
  • Campaign implementation
  • Long-term advocacy program maintenance

Method

  • Research Methods:Surveys and focus groups
  • Patient Engagement:Involvement in advocacy planning
  • Data Collection & Analysis:Survey analysis and feedback review

Metrics

Increased advocacy and collaboration
  • Participation rates
  • Campaign reach

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