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LATEST PATIENT WORTHY ARTICLES

pulmonary arterial hypertension

DNMT3B Gene May Cause Pulmonary Hypertension, PAH Development

Recently, Pulmonary Hypertension News shared some burgeoning medical news: that the DNMT3B gene has now been linked to the development of pulmonary hypertension (PH) and a rare

Waldenstrom Macroglobulinemia

BET Inhibitors Could Treat WM, Study Says

Waldenstrom macroglobulinemia (WM) is incredibly difficult to treat. In addition to having no cures, the condition only has one approved treatment option. However, researchers now

Spinal Muscular Atrophy

Thanks to This Toddler, Spinal Muscular Atrophy Was Added to the Newborn Screening

As reported in WTNH; in Stafford Springs, CN, the Pokorny family was rudely awakened to the world of rare diseases when their new daughter Olivia

tuberous sclerosis complex

Tuberous Sclerosis Complex

Study Reveals Gene Therapy as a Possible Tuberous Sclerosis Complex Treatment

According to a story from news-medical.net, a team of scientists affiliated with Massachusetts General Hospital has conducted a study revealing that gene therapy could be

cancer

Cancer

This Drug Could be Effective Against Tumors with a Rare Mutation

According to a story from Medscape, in a recent study the drug capivasertib appeared to be effective as a treatment for certain metastatic cancer tumors.

Granulomatosis with Polyangiitis

Riabni Now FDA-Approved for GPA and MPA

According to ANCA Vasculitis News, the FDA recently approved Riabni (rituximab-arrx) for the treatment of adult patients with two specific subtypes of ANCA vasculitis: microscopic

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RARE CLASSROOM

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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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