Supporting the nutritional management of your rare community

As most rare diseases do not have a licensed treatment, patients and families often have to find ways of managing their symptoms. Sometimes, depending on the exact condition a person has, they can manage their symptoms or slow the progression of their disease by controlling their diet. Even if a rare disease has a licensed treatment, those living with the condition may need to watch their diet, as the therapy could have an adverse effect on another system in the body.

Patient groups can play a big role in supporting their community to effectively manage their diet. They can work with researchers and dieticians to communicate complicated dietary information and diets in ways that make it easier for patients and families to follow.

Please note that this course does not describe any specific dietary plans to follow. Examples and case studies are provided to give a perspective of what patient groups can achieve.

With thanks to:

Beacon volunteer Marco Gallotta wrote this course on a voluntary basis. He introduces the course in the video above! At the time of writing, Marco was entering his third year studying biomedical sciences at Royal Holloway University London.

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Resource type

Course



Skill level

Intermediate



Duration

Est. 90 minutes



Last updated

March 2024



Resource type

Course



Skill level

Intermediate



Duration

Est. 90 minutes



Last updated

March 2024

What will you learn in this course?

What nutritional management is
Why nutritional management is important
Different options for disseminating nutritional management information
Examples from patient groups who have developed and distributed nutritional information about their rare condition

Who is this course for?

This course is designed for patient organisations who want to better support the nutritional management of their rare community. You’ll learn ways to share nutritional information with your community and explore five case studies from fellow rare disease patient groups who have been successful in helping their members to manage their diet, both on treatment and off.