Adults Living Rare

LIVING RARE
Perspectives, Insights & Experiences (PIE)

WE ARE RARE.

Neuromuscular Disease Foundation

Nov 18, 20227 min read

Diversity, Equity, Inclusion (DEI)

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

Rare Disease Awareness

Dysautonomia and Gastroparesis

Gastroparesis is a condition caused by the slowed or stopped movement or contraction of your stomach muscles...

The Care Notebook: An important tool for individuals, their families, caregivers, and medical team

The Propionic Acidemia Foundation (PAF)

Oct 26, 20224 min read

Adults Living Rare

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

Living Rare

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 10, 20222 min read

Living Rare

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

Adults Living Rare

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

Adults Living Rare

High Pressure Headaches

What is the difference between low pressure headaches and high pressure headaches?

Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT

Sep 20, 20224 min read

Living Rare

Pressure Headaches

CSF surrounds the brain and spinal cord and is contained within the meninges...

Why Does Pain Increase with Weather Changes?

Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT

Sep 12, 20224 min read

Living Rare

Why Does Pain Increase with Weather Changes?

September 12, 2022 - Written By: Maria Arini Lopez, PT, DPT Do you ever feel that your joints, bones, muscles, and/or head start to...

The Impact of Healthcare Pricing & Transparency on the Rare Disease Community

Aston Martinez

Aug 19, 20225 min read

Living Rare

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

Media Messaging on Inter-abled Relationships: What Are We Saying to The Disabled Community?

Neuromuscular Disease Foundation

Jul 25, 20224 min read

Living Rare

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 ...

The Specious Reason Behind the Lack of Diversity, Equity, and Inclusion Training in the Workplace

Aston Martinez

Jul 21, 20229 min read

Diversity, Equity, Inclusion (DEI)

The Specious Reason Behind the Lack of Diversity, Equity, and Inclusion Training in the Workplace

The Disability Spectrum & Why It Matters

Aston Martinez

Jun 27, 20225 min read

Living Rare

The Disability Spectrum & Why It Matters

Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT

Jun 17, 20224 min read

Living Rare

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

Consciously Shifting the Dynamic of Patient Storytelling

Neuromuscular Disease Foundation

Jun 1, 20224 min read

Living Rare

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

Living Rare

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...

The Harms of Being Labeled a ‘Difficult’ Patient

Aston Martinez

May 24, 20228 min read

Living Rare

The Harms of Being Labeled a ‘Difficult’ Patient

Maria Arini Lopez, PT, DPT, CSCS, CIMT, CMTPT

May 20, 20226 min read

Living Rare

Where the Body and Mind Intersect

How does a rare disease diagnosis, chronic illness, or disability affect a person's mental health?

Dating & Healthy Relationships for People with Disabilities

Aston Martinez

May 9, 20227 min read

Living Rare

Dating & Healthy Relationships for People with Disabilities

Many people mistakenly believe that people with disabilities don’t desire sex and relationships, or that they are entirely unable to do so.

Aston Martinez

May 2, 20228 min read

Living Rare

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 8, 20226 min read

Living Rare

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...

Great news for Rett syndrome and other similar rare diseases on the autism spectrum

Adults Living Rare

Dec 15, 20205 min read

Adults Living Rare

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

The first Community-based stakeholder collaboration zone

Adults Living Rare

Mar 5, 20201 min read

Adults Living Rare

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.

LIVING RARE Perspectives, Insights & Experiences (PIE)

LIVING RARE
Perspectives, Insights & Experiences (PIE)