Rare Advocacy Learning

Rare Advocacy Learning 2023

Growing Successful Federal Advocacy for Rare Diseases

Rare Advocacy Learning Seminars

1. Share about events, news, or other topics of interest with one another!
2. Participant Directory
1. Links to Pre-Learning Resources
2. Video: Federal Agencies: Impact on Rare Diseases
3. Video: Congressional Appropriations Process
4. FDA Organization Chart
5. NIH Organization Chart
6. RDLA Tip Sheet on Appropriations
7. RDLA Glossary of Policy and Legislative Terms
1. Agenda for Rare Advocacy Learning 2023
2. Course Description and Orientation Information
1. Recording of the Orientation held on April 25
2. Orientation Slides
1. Recording of Federal Healthcare Eco-System session
2. Slides for the Federal Healthcare Ecosystem session
3. Quiz for the Federal Healthcare Eco-system session
4. Additional resources for the Federal Healthcare Eco-System session
5. Agenda: Week 1: Federal Healthcare Eco-System
1. Recording of the Healthcare Policy Landscape in the 118th Congress session
2. Slides for Healthcare Policy Landscape in the 118th Congress
3. Agenda: Week 2: Healthcare Policy Landscape in the 118th Congress
1. Recording of the Disability and Genetic Discrimination Policy session
2. Slides for Part 1 American with Disabilities Act
3. Slides for Part 2 Genetic Information Nondiscrimination Act
4. Quiz: Disability and Genetic Discrimination Policy Issues
5. Agenda: Week 3: Disability and Genetic Discrimination Policy Issues
1. Recording of Advocacy on the Hill and with Federal Agencies
2. Slides for Advocacy on the Hill and with Federal Agencies
3. Links from the session's presentations
4. Agenda: Week 4: Advocacy on the Hill and with Agencies
1. Recording of the Amplifying Your Voice: Panel Discussion with Rare Disease Advocates Instrumental in Policy Change
2. Agenda: Week 5: Amplifying Your Voice: Panel Discussion with Rare Disease Advocates Instrumental in Policy Change
1. Ideas for final project topics
2. Sample Final Project Presentation

Free
34 lessons
1 hour of video content

Rare Advocacy Learning 2023

Rare Advocacy Learning Seminars

Community Engagement

Pre-Learning Resources

General Course Materials

Tuesday, April 25th: Rare Advocacy Learning Orientation and Virtual Happy Hour (LIVE)

Week 1: Tuesday, May 2: Federal Healthcare Eco-System (RECORDING)

Week 2: Tuesday, May 9 at 4-5:30 pm EST: Healthcare Policy Landscape in the 118th Congress (LIVE)

Week 3: Tuesday, May 16, Disability and Genetic Discrimination Policy Issues (RECORDING)

Week 4: Tuesday, May 23 at 4-5:30 pm EST, Advocacy on the Hill and Agencies (LIVE)

Week 5: Tuesday, May 30 at 4-5:30 pm EST, Amplifying Your Voice: Panel Discussion with Rare Disease Advocates Instrumental in Policy Change (LIVE)

Week 6: June 12-16: Final Project Presentations

Take your advocacy journey to the next level.