Rare Disease Day February 2022

On the 28th of February, it is a day where everyone comes together to raise awareness for rare disease day, by doing this it brings everyone together to raise awareness of many rare diseases out there that need to be acknowledged and understood.

Rare Disease Day gives us an opportunity to share our own stories and raise this awareness via social media, therefore by doing this you will be amazed how many people then contact us.

This year we are going to be showing our colours, this can be shared in lots of ways but we have decided to share photos of your rare ones wearing colours.

Many Thanks

If you would like to share your rare one or your story with us and you don’t mind them being published on our social media pages and website, then please do get in touch. I will be adding colours to all the photos sent to us and they will be shared over the course of the day on the 28th of February and don’t forget to add your hashtag (#ShowYourColors).

The Metabolic Foundation



Triheptanoin (Dojolvi)

A clinical trial has been running since 2014 for the treatment of Long Chain Fatty Acids, this trial drug is called Triheptanoin.

Ultragenyx has now announced that this drug has been FDA approved and has been given to patients on compassionate grounds.

Dojolvi is a highly purified, pharmaceutical-grade, odd-carbon medium-chain triglyceride consisting of three 7-carbon fatty acids on a glycerol backbone created via a multi-step chemical process. It is designed to provide medium-chain, odd-carbon fatty acids as an energy source and metabolite replacement for people with LC-FAOD.

Dojolvi is indicated as a source of calories and fatty acids for the treatment of adult and pediatric patients with long-chain fatty acid oxidation disorders (LC-FAOD).

For more information please click on the download option.


Triheptanoin (Dojolvi) Approval Article

Here is an article about the recent clinical trial drug known as Triheptanoin (Dojolvi).

This is a very useful link.


Fatty Oxidation Disorder

Here is some information about a Fatty Oxidation Disorder that you may find useful

Here is a link of the full article

Meeting info Uncategorised

Upcoming Meeting

We are currently organising some dates for 2022