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LATEST PATIENT WORTHY ARTICLES

Waldenstrom Macroglobulinemia

IMBRUVICA Prescribing Information for WM Includes iNNOVATE Data

In late December 2020, biopharmaceutical company AbbVie announced via press release that the prescribing information for IMBRUVICA (ibrutinib) is now updated to include long-term

Hemophilia

Positive GENEr8-1 Trial Data Available for Hemophilia A

On January 10, 2021, biotechnology company BioMarin Pharmaceutical Inc. (“BioMarin”) shared positive data from its Phase 3 GENEr8-1 clinical trial. The clinical trial is

PAH lungs

Idiopathic Pulmonary Fibrosis

United Therapeutics Sponsors PFF Registry

In a recent press release from mid-January 2020, the Pulmonary Fibrosis Foundation (PFF) announced that its registry, the PFF Registry, was being sponsored by

Myotonic Dystrophy

New Preclinical Data on Myotonic Dystrophy Treatment

According to an article in BioSpace, Dyne Therapeutics has recently announced data from preclinical trials of its FORCE platform. This program is aimed at creating

Juvenile GM1 gangliosidosis

Approvals Granted to Begin LYS-GM101 Clinical Trial for GM1 Gangliosidosis

In an exciting press release, gene therapy platform company Lysogene announced that it had received approval from the Medicines and Healthcare products Regulatory Agency (MHRA)

Auditory neuropathy spectrum disorders

New Program Aims to Improve Auditory Neuropathy Genetic Testing Access

According to a story from GlobeNewswire, a new partnership between the precision genetic medicine company Akouos, Inc. and and Blueprint Genetics has produced the Resonate

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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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