MPS I Diagnostic Journey Animated Video
https://youtu.be/jSq5tQD4nxE
Symptoms of MPS I – Animated Video
Click to watch the video describing early symptoms of MPS I. https://youtu.be/h111oEHS7-c
MPS I Parents talk about their diagnostic journey
Click to watch the video of Canadian MPS I parents where they share their stories about the diagnostic journey of their children. https://youtu.be/tKflBtR6iYI
Hunter Syndrome “Listening Session” Feb 4, 2020
Dear Members, We are writing to invite you to participate in an important phone call to help inform staff of the U.S. Food and Drug Administration (FDA) about the patient and caregiver experience of living with Hunter Syndrome. This is part of a “Listening Session” being co-hosted by FDA’s Patient Affairs Staff (PAS) and the National [...]
Write an MPS Caregiver Job Description that Attracts the Strongest Candidates
People living with MPS affected family members know just how hard the job of caring for them is. Depending on the severity of the symptoms, it can be very hard to provide the necessary care and attention. It can also take a toll on your own well-being. This is why it’s important to look for help [...]
How to Deal with the Stress and Anxiety from Taking Care of a Child with MPS
It’s a parent’s responsibility to love and protect their children and keep them from harm’s way, allowing them to grow up strong and healthy. That’s the normal way most people look at parenting. But, what happens when their child is diagnosed with a chronic illness like MPS? Aside from worry and gathering all the information and [...]
Sangamo’s patient education materials: 10 Things to Know About Clinical Trials, and Understanding New Discoveries in Genomic Medicine.
We are pleased to share with you Sangamo’s patient education materials: 10 Things to Know About Clinical Trials, and Understanding New Discoveries in Genomic Medicine. Click to watch a short educational video: Understanding New Discoveries in Genomic Medicine
Symptoma.com – Helping Physicians To Make The Right Diagnosis For Their Patients.
Symptoma.com is a search engine for diseases. Patients and doctors enter symptoms and receive a list of matching causes - sorted by probability. Try it out for MPS related symptoms, such as "middle ear infections, bushy eyebrows": https://www.symptoma.com/en/search?query=middle%20ear%20infections%2C%20bushy%20eyebrows MPS I: https://www.symptoma.com/en/info/mucopolysaccharidosis-1 MPS II: https://www.symptoma.com/en/info/mucopolysaccharidosis-2 MPS III: https://www.symptoma.com/en/info/mucopolysaccharidosis-3 MPS IV: https://www.symptoma.com/en/info/mucopolysaccharidosis-4 MPS VI: https://www.symptoma.com/en/info/maroteaux-lamy-syndrome [...]
Morquio B patient/caregiver survey: First insight into the natural course of a rare GLB1 related condition
Morquio B disease (MBD) or Mucopolysaccharidosis type IV B (MPS IV B) is caused by particular GLB1 mutations specifically affecting the affinity of beta-galactosidase to keratan sulphate, resulting in dysostosis multiplex resembling Morquio A (MPS IV A) disease (GALNS deficiency). Additional neuronopathic features of GM1 II/III (juvenile/adult) gangliosidosis have been reported in some patients. The patient/caregiver online survey was aimed at [...]
Canadian Consensus Position Statement for the Diagnosis and Management of MPS II
June 15, 2018 VANCOUVER, BC – Today, the Canadian MPS Society issued a national consensus statement that provides updated Canadian guidelines for the management of patients with MPS II. A consensus meeting was held in Toronto, Ontario, including a multidisciplinary group of experts in the management of patients with MPS II. The group reviewed available published guidelines [...]