Neuromuscular Disease Foundation
Accessibility
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
Perspectives, Insights & Experiences (PIE)
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Neuromuscular Disease Foundation
- Jul 25, 2022
- 4 min
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 ...
Aston Martinez
- Jul 21, 2022
- 9 min
The Specious Reason Behind the Lack of Diversity, Equity, and Inclusion Training in the Workplace
The Specious Reason Behind the Lack of Diversity, Equity, and Inclusion Training in the Workplace
Aston Martinez
- Jun 27, 2022
- 5 min
The Disability Spectrum & Why It Matters
The Disability Spectrum & Why It Matters
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
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...
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
- 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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