top of page
LIVING RARE
Perspectives, Insights & Experiences (PIE)
Search
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...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Oct 31, 20223 min read
Dysautonomia and Gastroparesis
Gastroparesis is a condition caused by the slowed or stopped movement or contraction of your stomach muscles...
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 24, 20222 min read
Thermoregulation Issues in Dysautonomia
October 24, 2022 - Written By: Maria Arini Lopez, PT, DPT Symptoms of dysautonomia are caused due to dysfunction within the autonomic...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Oct 17, 20224 min read
POTS: What is It?
POTS is one of the many possible symptoms of dysautonomia, a disorder affecting the autonomic nervous system (ANS).
Aston Martinez
Jun 27, 20225 min read
The Disability Spectrum & Why It Matters
The Disability Spectrum & Why It Matters
Neuromuscular Disease Foundation
Jun 1, 20224 min read
Consciously Shifting the Dynamic of Patient Storytelling
The Neuromuscular Disease Foundation and RAM Challenge You to Change the Way You Tell Patients’ Stories
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...
Aston Martinez
May 24, 20228 min read
The Harms of Being Labeled a ‘Difficult’ Patient
The Harms of Being Labeled a ‘Difficult’ Patient
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
May 20, 20226 min read
Where the Body and Mind Intersect
How does a rare disease diagnosis, chronic illness, or disability affect a person's mental health?
Aston Martinez
May 16, 20225 min read
Are Mobile Healthcare Apps Jeopardizing Your Privacy?
For many people, it doesn’t come as much of a surprise that any online technology carries massive risks to our privacy...
Aston Martinez
May 2, 20228 min read
Value Your Rare
As members of the rare disease community, it's easy to feel isolated, unheard, invisible and exploited...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Apr 29, 20223 min read
Human Genome Now Practically Fully Sequenced: What does this mean for the Rare Disease Community?
This genome sequence will undoubtedly serve as a firm foundation for the development of effective treatments and potential cures for over 56
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Apr 15, 20224 min read
Dry Eye Can Contribute to Fatigue 🥱
About 3 years ago, I went to my eye doctor for a routine exam. She asked me if I had any concerning symptoms that had started since our ...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Apr 8, 20226 min read
Tips and Tricks to Improve your Sleep 😴
It is a vicious cycle—experiencing complete and utter exhaustion every waking hour of the day, yet when you crawl into bed at night...
Olha Urys
Mar 24, 20227 min read
Tragedy and Hope: the Voices of the Living Rare Community in Ukraine 🇺🇦
The morning of February 24th has changed the life of every Ukrainian forever.
"Our Lives Matter"
Feb 28, 20215 min read
"We CARE About Rare Lives"
"We CARE About Rare Lives" is the community-focused response to the "Our Lives Matter" global rare disease call-to-action.
"Our Lives Matter"
Jan 25, 202111 min read
In response to the RARE-X DEIP Announcement
An important message on behalf of the rare disease community of color written by the “Our Lives Matter” Diversity, Equity, Inclusion (OLM DE
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.
bottom of page