In Germany, since 2005, the long-chain fatty acid oxidation disorders

(LC- FAOD) and the disturbances of carnitine transport are part of the extended newborn screening.

The Austrian screening programme for newborns covers the same target diseases.

The daily challenges of diet and dealing with authorities are very similar for VLCAD deficiency, LCHAD /TFP deficiency and carnitine transporter disorders.

That’s why we want to share our experiences and offer our help. This includes:

• First phase of life after screening
• Everyday life/ nutrition etc.
• Experiences in applying for integration status/ severely disabled person's card
• Informations on Kindergarden (e.g. training of the educators)
• School and after-school care
• Aplication for rehabilitation measures
• Dealing with doctors on admission to hospital
• Transition to adulthood

We also want to inform you about the current research situation and events concerning these deseases and establish connections between researching doctors and affected patients.

For the interchange between families of children affected with a long-chain fatty acid oxidation disorder:

VLCAD deficiency, LCHAD/TFP deficiency, carnitine transporter disorder

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.

Brief of description of the clinical picture and nutrition

Brief of description of the clinical picture and nutrition