Living with alpha-mannosidosis (AM) can be difficult, and you may not always have the information or structure you need to speak to a healthcare professional about your condition.
This series of resources, jointly developed by the MPS Society, Rare Disease Research Partners (RDRP) and the International Society for Mannosidosis and Related Diseases (ISMRD), helps patients and caregivers better understand the condition, keep track of their health and stay organised when living with AM.
These resources have been funded by Chiesi Global Rare Diseases and developed by Rare Disease Research Partners in collaboration with MPS Society UK, ISMRD, specialist clinicians, a metabolic nurse, and reviewed by people with alpha-mannosidosis and their caregivers. Everyone involved received a fee for their consultancy advice, except for people with AM and their caregivers, who kindly shared their invaluable time and expertise voluntarily.
These resources do not provide medical advice; always consult a healthcare professional with any medical concerns.
Resources that are available:
Information about AM
Resource for HCPs who do not know about AM
Resource for caregivers/individuals with AM going to HCPs
Resource for schools with a child with AM
Resource for a parent/young person with AM going to school
Patient diary
