Description

+ Include: 9 videos + 4 pdfs, size: 5.7 GB

+ Target Audience: endocrinologist, internist, family medicine physician, primary care physician

+ Sample video: contact me for sample video

+ Information:

Description

Target Audience

Learning Objectives

At the end of this activity, participant should be able to:

1. Research about the national efforts in solving the mystery in the presentation of undiagnosed rare diseases and learn how to refer individual patients
2. Utilize disciplines such as engineering in helping to solve puzzles and improve therapeutics in rare diseases
3. Explain how disease modeling provides insights for breakthroughs for rare diseases
4. Review the efforts of the Food and Drug Administration in the development novel drugs for the rare diseases
5. Discuss barriers/challenges in access to state-of-the-art care (in both diagnostics and therapeutics)
6. Brainstorm on the reinvention of care for patinets with rare diseases and disabilities across lifetime

+ Topics:

Basic Research- The Power of Animal Models and their Promise in Rare Disease.pdf

Community Leaders and Patient Champions- Navigating Resources for Rare.pdf

complete 2022 Rare Disease Day Web Brochure_0.pdf

Family Dynamics and Difficult Moments- A Different Facet of Rare Diseases.pdf

FDA’s Orphan Drug Designation Program.pdf

FEBRUARY 25 BONUS.ts

FEBRUARY 25.ts

FEBRUARY 26 BONUS.ts

FEBRUARY 26.ts

Full Spectrum Translation in Rare Disease Research.pdf

Holistic Care Design for Chronic Intellectual Disabilities.pdf

Insights from the Undiagnosed Diseases Network.pdf

Rare Advocacy Council At The State Level- Lessons From Michigan For National Stage.pdf