Living with alpha-mannosidosis can be difficult, and you may not always have the information or structure you need to speak about your condition with others involved in your care and support.
This series of resources is designed to help patients and caregivers better understand the condition and includes information about alpha-mannosidosis and practical tools such as a health diary or guidance for communicating with schools and healthcare professionals.
These resources have been funded by Chiesi Global Rare Diseases and jointly developed by the MPS Society, Rare Disease Research Partners (RDRP), the International Society for Mannosidosis and Related Diseases (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 alpha-mannosidosis 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.
