Michigan Rare Disease Day 2022

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Michigan Medicine Rare Disease Day 2022

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

Course Audience: endocrinologist, internist, family medicine physician, primary care physician

Overview:

Friday – Saturday, February 25-26, 2022

10:15 – 5:00 pm EST

Description

This course will illustrate how physicians reframe communication and stimulate interdisciplinary, patient-centered research to accelerate the pace of discovery for those living with rare diseases in alignment with Rare Disease Day.

Target Audience

This activity is appropriate for:

Medical Students, Nurse Practitioners, Nurses, Other Healthcare Professionals, Physician Assistants, Physicians, Social Workers

In the fields of:

Endocrinology, Family Medicine, General Medicine, Internal Medicine, Other Healthcare Professions, Pediatrics, Primary Care, Social Work

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

Basic Research- The Power of Animal Models and their Promise in Rare Disease (PDF Format)

Community Leaders and Patient Champions- Navigating Resources for Rare (PDF Format)

complete 2022 Rare Disease Day Web Brochure_0 (PDF Format)

Family Dynamics and Difficult Moments- A Different Facet of Rare Diseases (PDF Format)

FDA’s Orphan Drug Designation Program (PDF Format)

FEBRUARY 25 BONUS (Video TS Format)

FEBRUARY 25 (Video TS Format)

FEBRUARY 26 BONUS (Video TS Format)

FEBRUARY 26 (Video TS Format)

Full Spectrum Translation in Rare Disease Research (PDF Format)

Holistic Care Design for Chronic Intellectual Disabilities (PDF Format)

Insights from the Undiagnosed Diseases Network (PDF Format)

Rare Advocacy Council At The State Level- Lessons From Michigan For National Stage (PDF Format)

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