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HUDDLEs are virtual, peer-to-peer support and ment HUDDLEs are virtual, peer-to-peer support and mentoring group meetings focused on the cognitive health & well-being of people diagnosed with GNE Myopathy. This group meets (virtually) monthly and provides a safe and confidential space for GNE Myopathy patients to talk to one another about whatever is on their minds. Next Huddle: July 10, 2022. Open the the global patient community. Sign up here: https://ndf.ticketspice.com/2022-july-patient-huddle #raredisease #patientsupport #patients #gnem #gnemyopathy
We would like to wish a happy Independence Day to We would like to wish a happy Independence Day to our community in United States. 🇺🇸 Wishing you all a wonderful day! #IndependenceDay #independenceday2022 #4thofjuly
What is GNE Myopathy? GNE Myopathy is a rare, inh What is GNE Myopathy? GNE Myopathy is a rare, inherited disease that causes progressive muscle weakness. The disease is caused by defects of the GNE gene. In this disorder the defect of the GNE enzyme disrupts the functioning of the sialic acid metabolic pathway, and interferes with normal muscle function. GNE Myopathy typically affects young adults. One of the first signs of the disease includes inability to lift the front of the foot (foot drop). This may cause toes to drag while walking. As the disease progresses, it usually leads to physical disability. GNE Myopathy does not affect the muscles of the face, or swallowing ability. It does not typically affect the heart or breathing muscles. GNE Myopathy is a rare disease estimated to affect around 6 in 1,000,000 people. It is found in populations worldwide but is more common in certain populations. Like many other rare diseases, GNE Myopathy is under diagnosed and many people with the disease remain undiagnosed. Find more information here: https://curegnem.org/programs/common-questions/what-is-gne-myopathy/ #patient #gnempatient #myopathy #ndf #gnemyopathy #gnem #neuromusculardisease #GNEM
💙 We celebrate artists living with disabilities 💙 We celebrate artists living with disabilities and chronic illness through NDF's featured artists series, and today we're sharin from @mandie_made_world We invite you to read her caption below to understand the depth of her artwork. 💙 • I want to preface this post with the admission of needing to invest in having a professional photographer take pictures, which is what I will do - I promise. . This piece is alcohol ink on plexiglass. It has an incredible sentimental value, as it was started inside a really cool filming project. So let me introduce you to her, meet EBB & FLOW: A BODY OF ILLNESS. She is a representation of how my disease crashes inside my body and what that translates to in life. . More to come on her and the project so stay tuned, obviously like and follow so you don’t miss the updates on the project. . #yqr #saskatchewanartist #alcoholink #fabrydisease #rarediseaseartist #rarediseaseart #rarediseaseawareness #visualartist #canadianartist #femaleartist
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