Alpha-mannosidosis is an ultra-rare genetic disorder caused by a deficiency of the lysosomal enzyme alpha-mannosidase. The symptoms, severity, and progression of alpha-mannosidosis vary widely between individuals, making diagnosis challenging and often delayed. Minimizing the time to diagnosis is important in ensuring that individuals with alpha-mannosidosis and their families receive timely access to support and specialist MDT care.
To assist, EIP has launched the Spot the Early Signs Resource Centre to spread education in local medical communities and further develop and expand the trained frontline healthcare professionals network. The Resource Centre allows members to collaborate, engage and interact and where they can easily find information and education when needed - both for members and to share with colleagues. All recorded webinars are available to view without charge via the Resources Section of the site, along with further information on the Faculty, the Upcoming Live New Webinars and how you can Join Us to make your colleagues ‘think rare’ at every opportunity.
Join the Spot the Early Sign Program Network and help mobilise child healthcare professionals' collective power to ’think rare’ and look for the signs of rare diseases in every consultation.
As a network member, you can volunteer as the main contact point in your clinic, hospital or institution and disseminate the Spot the Early Signs material and resources to your colleagues. You can also volunteer to deliver a Spot the Early Signs Webinar in a local language with all slides and material provided by EIP.
Signing up and accessing all the latest guidance, webinars, and educational materials is free.