We seek to promote connection and education on the Morquio syndrome, as well as specific issues the community wishes to address. Through meeting one another, developing friendships, and engaging with the medical community, it is our hope that we can draw strength in our union and develop a voice to improve our social as well as physical well being.
We have a listserv and community meetings to help folks connect and share and build relationships.
Members of this community include top doctors who offer updates on research and best practices.
Take comfort knowing that you have a diverse group of people with similar experiences supporting you.
**Excerpt of post originally written for Allstripes. Link to full article below.** Pretty much my whole life I’ve done arts and crafts — origami, drawing, sewing, painting. My grandfather’s an artist on my mom’s side Read more…
Hello Morquio community! My 8yo son just completed hematopoietic stem cell transplant* (HSCT) to resolve his enzyme deficiency that was brought on by MPS IVA, Morquio Syndrome. This treatment for Morquio was the 2nd treatment of Read more…
For this month, around Valentine’s Day, we’ll post a series related to dating and relationships while living with Morquio. This can be a complicated topic raising a whole list of questions: How should I approach Read more…
1249 Wilhelmina Rise, Honolulu, HI, 96816
Maria McClellan
morquiocommunity@gmail.com
