The Rare360 Editorial Team
Rare Diseases, Mental Health Issues, and What We Can Do About It
For the rare disease community, mental health is not just a topic to discuss during the month of May. Mental health must remain a priority.
top of page
LIVING RARE
Perspectives, Insights & Experiences (PIE)
Search
The Rare360 Editorial Team
May 30, 20237 min read
Thought Leadership in Mental Health For Rare Diseases
A discussion with Mental Health for Rare Thought Leader JC Muyl
Jessica Wong
Jan 31, 20235 min read
Helping People Diagnosed with a Rare Disease Overcome Mental Health Challenges
Mental health challenges affect people of all ages, including children and teenagers...
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).
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?
Aston Martinez
Aug 19, 20225 min read
The Impact of Healthcare Pricing & Transparency on the Rare Disease Community
Imagine this: you’ve just arrived back home from running errands and decide to check the mail, whereupon you find that you’ve received an ou
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
Jun 17, 20224 min read
Tension-Type Headaches
Headaches can be debilitating, making focus and concentration at school or work incredibly difficult. They are one of the top health reasons
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?
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
May 13, 20223 min read
What are Expanded Access Programs?
What happens when you can't participate in a clinical trial for whatever reason? Expanded Access happens...
Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT
May 6, 20225 min read
Trigger Points: What are They and How Do They Contribute to Pain?
Have you ever had a massage where the therapist found an especially tender area in the muscle that felt like a knot?
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.
bottom of page