Leo Deliverables for 2026 Grant

The following items have been identified as deliverables for the 2026 Leo Grant. Most of these do not involve the website. Click the menu item Leo Enhancements to see the short list of items specific to Phase 2.

1. Website & Digital Infrastructure (All Things PG platform)

• Dedicated All Things PG website serving as a centralized hub for education, advocacy, research, and community-building.
• PG Clinic/Provider Finder tool with an interactive searchable map and provider survey/verification system.
• Educational content library for patients and providers (symptoms, diagnosis, treatment, multimedia tools, recorded sessions, registration links).
• Patient & caregiver surveys to collect real-world experience data.
• Clinical Trials information page listing open trials and providing education about participation.
• Peer Support (“Buddy”) System for research participation mentoring.
• Secure provider-to-provider communication system.

2. Patient & Community Engagement

• Establishment of a Patient and Family Advisory Committee (PFAC).
• 12 PFAC meetings per year.
• One annual retreat (full-day or two half-days).
• Hybrid meeting format with audiovisual support.
• Community events, storytelling initiatives, and patient advocacy activities.

3. Educational Resources & Communications

• Standardized, expert-reviewed patient education materials.
• Provider education materials/toolkits.
• Videos and multimedia learning tools.
• Social Media Toolkit.
• Coordinated awareness campaigns.
• Printed educational materials (letters/postcards).
• Downloadable patient education resources.

4. Events & Training

• Quarterly patient-facing virtual forums.
• Clinician-focused training sessions.
• Delivery of education via Project ECHO telementoring model.
• Case-based learning discussions.
• Ongoing CME-style provider engagement targeting 60+ clinicians.

5. Research & Clinical Trial Enablement

• Dissemination of IRB-approved research studies/surveys.
• Research-ready patient registry/engagement pipeline.
• Increased clinical trial enrollment support.
• Pilot research funding support (supplies, statistical analysis, publication fees).

6. Marketing & Outreach

• Digital advertising campaigns (Google, Facebook, Instagram).
• Email communications/newsletters.
• Conference presence and materials (posters, printed collateral, sponsorship prospectus printing).

7. Personnel & Operational Support (to Execute Deliverables)

• Project Manager.
• Research Assistant/Coordinator.
• Patient Leaders/Committee Leads.
• Provider education facilitation team.

Back to top