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.

Children's book 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.

REQUEST A BOOK

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.

DIAGNOSIS

SYMPTOMS & LIFESTYLE

TREATMENTS & SURGERIES

Write your own question

Would you like to add another question to ask your doctor? Write it in this space and we’ll put it on your list.

Something missing? If you have a questions that could improve this list, please share it with us.

 

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

Personalized Management Plan Worksheet

This can help you work with your geneticist to make a personalized management plan.

Morquio A Questions and Answers

This can help you talk to people who might not be familiar with Morquio A.

External Resources

Organizations

The National MPS Society logo
The National MPS Society

Publishes informative guides and newsletters, holds conferences, and raises money to support awareness and treatment of MPS diseases.

Little People of America, Inc. (LPC) logo
Little People of America, Inc. (LPA)

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.

The National Organization for Rare Disorders (NORD) logo
The National Organization for Rare Disorders (NORD)

Dedicated to helping people with rare diseases.

National Council on Disability (NCD) logo
National Council on Disability (NCD)

Advises federal agencies on programs and policies that affect individuals with disabilities.

Got Transition/Center for Health Care Transition Center logo
Got Transition/Center for Health Care Transition Center

Supports young people as they move from pediatric health care into the adult health system.

My Personal Health Record (PHR) logo
My Personal Health Record (PHR)

Helps patients manage and protect personal health records.

Global Genes logo
Global Genes™

A rare and genetic disease parent advocacy group that promotes the needs of the rare disease community.

Hide & Seek Foundation logo
Hide & Seek Foundation

Focused on lysosomal disease research.

MPS ML Forum logo
MPS ML Forum

Providing documents, tips, information, and advice, the MPS ML Forum provides valuable information for parents of children with Morquio A and other diseases.

Painted Turtle camp logo
Painted Turtle

Offers a camp for for kids and families during Skeletal Dysplasia and Mucopolysaccharidosis Week.

Camp Korey logo
Camp Korey

Serves children with serious medical conditions at no cost.

DavidsProject camp logo
DavidsProject

Provides a camp experience for children who might not be able to attend camp due to financial concerns.