Neuromuscular Disease Foundation
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Where are we still falling short? Where can accommodations for disabled persons be improved? November 18, 2022 “Staff were huffing and...
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LIVING RARE
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Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
- Oct 31, 2022
- 3 min
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, 2022
- 4 min
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, 2022
- 2 min
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, 2022
- 4 min
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, 2022
- 5 min
The Disability Spectrum & Why It Matters
The Disability Spectrum & Why It Matters
Neuromuscular Disease Foundation
- Jun 2, 2022
- 4 min
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 27, 2022
- 6 min
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, 2022
- 8 min
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, 2022
- 6 min
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, 2022
- 5 min
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, 2022
- 8 min
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, 2022
- 3 min
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, 2022
- 4 min
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, 2022
- 6 min
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 25, 2022
- 7 min
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, 2021
- 5 min
"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, 2021
- 11 min
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, 2020
- 5 min
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, 2020
- 1 min
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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