Rare Disease Awareness

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4 Chapters

1 Hour

Rare Disease Awareness

Explore rare diseases, their genetic impact, and the support systems available, including resources like the National Rare Diseases Information Service, Orphanet, care pathways, and genetic counselling. Gain essential knowledge to understand and navigate the challenges faced by individuals with rare diseases.

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£4.00

Rare Disease Awareness

4 Chapters

1 Hour

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Industry-backed eLearning

About The Course

Learning Outcomes

Course Modules

1

About The Course

This course provides comprehensive insights into rare diseases and the resources available for individuals affected by them. Gain a solid understanding of rare diseases, their genetic implications, and the support systems in place to assist patients and healthcare providers. Learn about the definition of rare diseases, the impact of a genetic diagnosis, and the importance of understanding various resources and support networks. These include the National Rare Diseases Information Service, Orphanet European database, care pathways, expert centres, psycho-social and community support, European Reference Networks, and genetic counselling. By the end, you will be equipped with the knowledge to navigate these complex areas and provide better support to those affected by rare diseases.

2

Learning Outcomes

Define what constitutes a rare disease.
Explain the impact of a genetic diagnosis on individuals and families.
Understand care pathways for rare diseases and how they are structured.
Recognize expert centres dedicated to rare diseases and their role in patient care.
Identify psycho-social and community supports available for those affected by rare diseases.
Understand the function of European Reference Networks in managing rare diseases.
Explain the process and significance of genetic counselling in rare disease diagnosis and management. Ask ChatGPT

3

Course Modules

Chapter 1 What is a Rare Disease?

Chapter 2 Rare Disease Supports and Resources for Healthcare Professionals

Chapter 3 Supporting Patients on Their Journey

Chapter 4 Summary

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