Websites

Creating a website could become your most powerful tool in raising awareness about the disease. This would serve as your main platform around which to develop your community, where you can gather and share information about nutritional plans and recipes and allow dietitians and professionals to easily reach you to help.

You can find some examples of websites giving nutritional information here:

• How diet can help people with Parkinson’s disease
• Foods that can help with osteoporosis
• How diet can help manage arthritis
• Action FCS- Familial Chylomicronaemia Syndrome (FCS)
• Stargardt’s connected
• AKU society
• General inflammation and food
• Eating well for your health/

Social media

Setting up groups on social media is an effective way to distribute information to people looking for it. If you have a large following who are interested in nutritional management you could get creative by making infographics with nutritional tips or recipes on them that are easily accessible and can be saved by your community.

The advantages are that people can provide their own tips, such as new appropriate foods they’ve found in the supermarket, and ask questions to each other.

The disadvantages are that information will disappear down the page as new posts are added and there could be misleading or incorrect information shared by other members of the group.

Recipe books

If your condition requires a complicated and quite restrictive diet you might think about writing or looking for a recipe book. This will allow your community to have a tool ready to use when in doubt, helping them avoid what can be harmful or toxic.

Including images will make the recipes easier to follow. Including nutrient content in the recipes also ensures that anyone can easily track what and how much they are eating.

The AKU Society wrote a recipe book for patients requiring a low protein diet. Find out more in the AKU Society case study later in this course.

Leaflets/ Brochures

Leaflets are a great way to reach out to people that do not know of your organization and are maybe part of isolated communities where word of your group has not spread yet. Try to make your leaflet as informative and eye-catching as possible. You could describe what kind of diet is beneficial for patients with the condition and/or give some taster recipes. Remember to include your contact information.

• You can see an example of a leaflet for haemochromatosis here

This leaflet contains basic dietary information a patient with haemochromatosis could make use of, including information about the substance of interest to them (iron), foods that can be beneficial, dietary suggestions and potential risk factors.

We also provide a more generic leaflet example that you can use as reference or as a template to adapt to your liking, you can access it here. 

Events

Events can be a really interactive way of disseminating information about eating well with a specific rare condition. You could include a session on diet at your next family day or conference, such as a Q&A session with a dietician or a cookery session with a chef. You could also team up with other charities or hospitals to fund and deliver the sessions.

Find out more about running events in our Stargardt’s Connected case study later in the course.

Charities, hospitals and professionals

Other charities, hospitals and professionals can help you connect with more people with the same condition, allowing you to build a strong network through which you can share information.

In particular, medical professionals can guide you to dietitians who will help you devise a dietary plan for your disease. You could also ask them to hand your leaflets out to any patients they come across.