Resources & Tools
Stay Connected
Join MorCommunity and stay connected by receiving the latest Morquio A news, information, tips, and developments.
A new children’s book is available to help you and your child learn about Morquio A.
Join Max on an exciting journey where he meets his cells and organs! They tell Max about Morquio A, how GAGs build up in his body, and why he sees a lot of doctors.
Questions for your doctor
To help plan ahead for doctor visits, we’ve put together a list of sample questions for you to save, print, and bring to your next appointment.
Guidelines & Helpful Tools
The American Journal of Medical Genetics (AJMG) Guidelines
The "International Guidelines for the Management and Treatment of Morquio A Syndrome" (The Guidelines) is published by the AJMG.
- It is the established set of recommendations for the management of Morquio A
- Familiarize yourself with the Assessments Overview Chart and share it with your team of specialists to get the best care possible
Other Tools for Morquio A
Other Tools for Morquio A
This can help you talk to people who might not be familiar with Morquio A.
External Resources
Organizations
Publishes informative guides and newsletters, holds conferences, and raises money to support awareness and treatment of MPS diseases.
Provides support and information to people of short stature and their families. LPA has a list of adaptive product vendors that people with Morquio A may find helpful.
Dedicated to helping people with rare diseases.
Advises federal agencies on programs and policies that affect individuals with disabilities.
Supports young people as they move from pediatric health care into the adult health system.
Helps patients manage and protect personal health records.
A rare and genetic disease parent advocacy group that promotes the needs of the rare disease community.
Focused on lysosomal disease research.
Providing documents, tips, information, and advice, the MPS ML Forum provides valuable information for parents of children with Morquio A and other diseases.
Offers a camp for for kids and families during Skeletal Dysplasia and Mucopolysaccharidosis Week.
Serves children with serious medical conditions at no cost.
Provides a camp experience for children who might not be able to attend camp due to financial concerns.