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LATEST PATIENT WORTHY ARTICLES

Charcot-Marie-Tooth disease

New Survey Examines CMT Medications’ Impact on Patients

Patient input is extremely important when evaluating treatments for rare diseases; Charcot-Marie-Tooth disease (CMT) is no exception. In order to understand the impact of different

Benign rolandic epilepsy (BRE)

Singer with Benign Rolandic Epilepsy (BRE) Releases New Single

Have you ever heard a song and heavily related to it? As though it was speaking directly to you? This is how I felt when

Duchenne Muscular Dystrophy

The FDA and Biopharmaceutical Companies Are Encouraging Patient Involvement

The medical community has been aware for some time now that patient involvement in his or her treatment is a critical part of therapeutic development.

Pemphigus and pemphigoid

Rare Classroom: Pemphigus Vulgaris

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on

Glioblastoma

New Finding: Overactive Mitochondria Are Responsible for Twenty Percent of Glioblastoma Brain Cancers

Neuroscience News recently carried an article heralding reports of researchers’ finding that upwards of twenty percent of lethal glioblastoma brain cancers may be treatable by

Cystic Fibrosis

Updates on MRT5005 Trial

Translate Bio has been moving forward with the development of their new drug candidate, MRT5005. This mRNA therapy was created to address the underlying cause

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UPCOMING EVENTS

RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

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Ehlers Danlos Syndrome affects the proteins in the

Ehlers Danlos Syndrome affects the proteins in the joints, making them extra flexible or hyper-mobile. This often causes EDS patients to experience joint pain and frequent dislocations.

Thank you to @themightysite for the graphic and survey!

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#raredisease #spoonie #chronicpain #chronicillness #geneticdisease #eds #ehlersdanlossyndrome #ehlersdanlos

Embracing the hardness of your disease can be vita

Embracing the hardness of your disease can be vital to recovering. It’s okay to feel angry and frustrated at your disease. Health means learning to live with the full spectrum of your feelings.

Thank you @worrywellbeing for this graphic!

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#raredisease #chronicpain #chronillness #spoonie #recovery #selfcare

One of our community members has shared this note

One of our community members has shared this note she left on her front door ahead of her building’s annual fire safety inspection. She said “Someone with an awesome immune system might not get sick themselves, but if they get exposed they could still pass it to me. I think it is good to normalize asking for what we need and good to remind people that their staying safe efforts arent just for themselves, but for others.”

Have you advocated for yourself or others in similar ways? Share your experiences in the comments!

#covid19 #immunecompromised #highriskcovid19 #wearamask #immunodeficiency #immunosuppressed

You might have to remind people about the extra bo

You might have to remind people about the extra boundaries to do with your illness. They need to let you sleep in, eat when your hungry, or make room for lots of bathroom breaks. Be kind to yourself and set those boundaries! You will learn what you need and how to get it too.

Thank you @spoonie_village for this graphic!

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#raredisease #chronicpain #spoonie #chronicillness #selfcare

We can all be grateful for that 😌 • • •

We can all be grateful for that 😌

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#raredisease #enfermedadesraras #enfermeras #enfermedadesautoinmunes #spoonie #enfermedadcronica #enfermedadescronicas

On our podcast, advocate Whitney Carter talks abou

On our podcast, advocate Whitney Carter talks about her journey to multiple diagnosis and how it led her to getting involved patient awareness.

Listen. Link in bio 👆👆

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#raredisease #chronicpain #chronicillness #spoonie

On the new podcast, "Fight the Swell," #HAE patien

On the new podcast, "Fight the Swell," #HAE patients discuss balancing school and work: https://bit.ly/3ojRV9Q

It fluctuates 😌 Thank you @decade2doodles for

It fluctuates 😌

Thank you @decade2doodles for this doodle!!

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#raredisease #chronicpain #chronicillness #spoonie

There’s not always a good reason for things we g

There’s not always a good reason for things we go through. Please don’t don’t me this is how it was supposed to be.

Thank you @how.u.feeling for this graphic 👆

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#raredisease #chronicpain #spoonie #chronicillness

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

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