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LATEST PATIENT WORTHY ARTICLES

Severe Atopic Dermatitis

Patients to Be Recruited Into ASLAN004 Expansion Cohort for Atopic Dermatitis

In a recent press release, biopharmaceutical company ASLAN Pharmaceuticals (“ASLAN”) announced that it would begin recruiting patients for an expansion cohort of a clinical

Rare Disease

Doctors Question Insurers’ Requirements for Prior Authorization

According to a recent article in Statnews, providers must obtain prior authorization from an insurer for several reasons; to start, the insurer often requires

Treacher Collins syndrome

Rare Disease

This Father and Daughter Were Born Without Ears or Cheekbones. Now, They’re Helping Others with Treacher Collins Syndrome

As reported in MSN, Duane Zingale explained that one aspect of being born with Treacher Collins syndrome is that you’re extremely memorable. Duane was born

Spinal Muscular Atrophy

Turkish Citizens Fighting for Access to Spinal Muscular Atrophy Treatments

Turkish citizens are putting pressure on their government in regards to access to rare disease treatments, specifically spinal muscular atrophy (SMA) therapies. There are currently

Kabuki Syndrome

Karate Kid Actors Send Well Wishes to Child with Kabuki Syndrome

Landon Groves was diagnosed with Kabuki syndrome, a rare multisystem disorder, and leukemia soon after his birth. Because of these conditions, his family faces hefty

nonalcoholic steatohepatitis

Nonalcoholic steatohepatitis

Inventiva Introduces Design for its Phase III Nonalcoholic Steatohepatitis Trial

According to a story from dernieresactus.fr, the biopharmaceutical company Inventiva has recently announced plans for its upcoming phase III clinical trial. This trial will investigate

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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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