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LIVING RARE
Perspectives, Insights & Experiences (PIE)
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Neuromuscular Disease Foundation
Nov 18, 20227 min read
Accessibility
Where are we still falling short? Where can accommodations for disabled persons be improved? November 18, 2022 “Staff were huffing and...
The Propionic Acidemia Foundation (PAF)
Oct 26, 20224 min read
The Care Notebook: An important tool for individuals, their families, caregivers, and medical team
October 26, 2022 Those with rare and complex disorders and their caregivers hold a crucial role in their care team. They often have to...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Oct 10, 20222 min read
Dysautonomia: What is It?
October is Dysautonomia Awareness Month, so my blogs for this month will focus on difference symptoms of and supportive treatments for ...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Sep 30, 20223 min read
Save Your Spoons!
An Energy Conservation Strategy for People Living with Chronic Illnesses
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Sep 21, 20222 min read
High Pressure Headaches
What is the difference between low pressure headaches and high pressure headaches?
Neuromuscular Disease Foundation
Jul 25, 20224 min read
Media Messaging on Inter-abled Relationships: What Are We Saying to The Disabled Community?
The trending Netflix show “Love on The Spectrum” features Autistic twenty-somethings who are navigating the dating world in search of ...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
May 26, 20226 min read
Applying for Jobs with a Disability
May 27, 2022 - Written By: Maria Arini Lopez, PT, DPT Under the best of circumstances, applying for a new job is stressful and...
Adults Living Rare
Dec 15, 20205 min read
Great news for Rett syndrome and other similar rare diseases on the autism spectrum
After receiving the disappointing news that GW Pharmaceuticals has made the difficult decision to discontinue their cannabidiol study in mid
Adults Living Rare
Mar 5, 20201 min read
The first Community-based stakeholder collaboration zone
This event will be hosting the very first Community-Based Collaboration Zone, a two hour event curated by the Rare Advocacy Movement.
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