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    Patient Worthy Memes

    New Study: Extending Imaging Including the Heart U New Study: Extending Imaging Including the Heart Upon Arrival in E.R. Helps Determine Cause of a Stroke https://bit.ly/451HzSf Read now at PatientWorthy.com
#Patientworthy #StrokePrevention #StrokeResearch
    Today is International Self-Care Day—a perfect r Today is International Self-Care Day—a perfect reminder to prioritize your well-being, listen to your needs, and take time for yourself. Small acts of self-care can make a big difference in your overall health and happiness. You deserve it! Swipe to discover some self-care tips. 💚 #InternationalSelfCareDay #SelfCareMatters #PatientWorthy
    Imagine living in a world where even the slightest Imagine living in a world where even the slightest touch, hug, or bump can cause painful blisters and open wounds. This is the reality of those living with Epidermolysis Bullosa (EB)- a rare genetic disorder that causes the skin to be incredibly fragile. Those affected fight every day with incredible strength, courage, and resilience. If you're interested in learning more or joining the conversation this week, visit patientworthy.com for the latest information! 
If you have a story to share, click the link in our bio.
#EBWarrior #RareDisease #ShareYourStory #EpidermolysisBullosa #PatientWorthy
    A Life Touched by Fragility: Living with Epidermol A Life Touched by Fragility: Living with Epidermolysis Bullosa. Read now at PatientWorthy.com
#PatientWorthy #EpidermolysisBullosa #EB #EBAwareness
    Alyssa's Story with Generalized Pustular Psoriasis Alyssa's Story with Generalized Pustular Psoriasis. Read now at PatientWorthy.com
#PatientWorthy #PatientStory #GeneralizedPustularPsoriasis #GPP
    Why Does Healthcare Feel Like an Obstacle Course f Why Does Healthcare Feel Like an Obstacle Course for Patients? An insightful piece by cancer survivor Sylvie Leotin.  Read now at PatientWorthy.com
#PatientWorthy #Cancer #Healthcare
    Castleman disease is a rare condition that involve Castleman disease is a rare condition that involves an overgrowth of cells in your body's lymph nodes. It's not cancer, but it can act like it - causing swollen lymph nodes, fatigue, and immune system issues. Awareness matters for early diagnosis and treatment! #WorldCastlemanDiseaseDay #RareDisease #ShareYourStory

If you're interested in sharing your story, click the link in our bio!
    Today is World Sjögren’s Day—a day to raise a Today is World Sjögren’s Day—a day to raise awareness for this complex autoimmune disease that causes dryness, fatigue, and pain, but often goes unrecognized. Let’s stand with the Sjögren’s community by spreading knowledge, promoting early diagnosis, and supporting those living with this invisible illness.  #WorldSjögrensDay #SjögrensAwareness #PatientWorthy
#ShareYourStory with us at the link in our bio!
    Whether it's a diagnosis, a daily struggle, or a v Whether it's a diagnosis, a daily struggle, or a victory- your experience matters! Be the voice that inspires change. Patient Worthy is looking for individuals who are interested in sharing their experiences with Epidermolysis Bullosa (EB). Message us, click the link in our bio, or visit patientworthy.com to share your story.
#EpidermolysisBullosa #PatientWorthy #ShareYourStory #RareDisease
    Finding Joy Through Art: How One North Texas Girl Finding Joy Through Art: How One North Texas Girl Thrives Despite a Rare Skin Condition. Read now at PatientWorthy.com
#PatientWorthy #EpidermolysisBullosa #EB
    Promising Progress: ANSELAMIMAB Advances in Phase Promising Progress: ANSELAMIMAB Advances in Phase III Trials for Light Chain Amyloidosis https://bit.ly/4o2Avxi Read now at PatientWorthy.com
#PatientWorthy #LightChainAmyloidosis #ClinicalTrials
    What causes Epidermolysis Bullosa? It’s much mor What causes Epidermolysis Bullosa? It’s much more than skin deep—EB starts with gene mutations that affect vital skin proteins. Learn the facts, spread awareness, and support research for a brighter future! #EpidermolysisBullosa #Genetics #RareDiseaseAwareness #EB #PatientWorthy
#ShareYourStory with us at the link in our bio!
    FDA Halts Sarepta’s ELEVIDYS Distribution and Cl FDA Halts Sarepta’s ELEVIDYS Distribution and Clinical Trials After Three Deaths Linked to Gene Therapy https://bit.ly/4eY8fHY Read now at PatientWorthy.com
#PatientWorthy #ELEVIDYS #Serepta #FDARejection #LimbGirdleMuscularDystrophy
    Today, on Fragile X Syndrome Awareness Day, we rec Today, on Fragile X Syndrome Awareness Day, we recognize the importance of early identification, genetic counseling, and ongoing research to support individuals with FXS. Fragile X reminds us how crucial science, compassion, and advocacy are in changing lives. If you are interested in sharing your story as a caregiver or someone living with FXS, click the link in our bio.
#FragileXAwareness #FXSResearch #GeneticTesting #PatientWorthy #EarlyIntervention
    FDA Halts Sarepta’s ELEVIDYS Distribution and Cl FDA Halts Sarepta’s ELEVIDYS Distribution and Clinical Trials After Three Deaths Linked to Gene Therapy. Read now at PatientWorthy.com
#PatientWorthy #ELEVIDYS #Serepta #FDARejection #LimbGirdleMuscularDystrophy
    Before a diagnosis, there's often a warning sign. Before a diagnosis, there's often a warning sign. That early symptom - subtle, vague, or easily dismissed - is called a prodrome. In rare diseases, recognizing it can make a difference. #RareDiseaseAwareness #RareWordOfTheWeek
    Moyamoya disease is a rare condition that often go Moyamoya disease is a rare condition that often goes undetected until it leads to serious symptoms like strokes or seizures. Raising awareness helps shorten the time to diagnosis and gives patients a clearer path forward. #MoyamoyaDisease #RareDiseaseAwareness #ShareYourStory
    Oliver's Story with SYNGAP https://bit.ly/4kLUSMh Oliver's Story with SYNGAP https://bit.ly/4kLUSMh Read now at PatientWorthy.com
#PatientWorthy #SYNGAP #SynGAPResearchFund #SRF
    This year, we shine a light on the importance of b This year, we shine a light on the importance of brain health for all and raise awareness for the millions living with neurological conditions. Your brain is the most powerful organ! Let's break the stigma, boost awareness, and advocate for access to neurological care worldwide.
#WorldBrainDay #BrainHealthForAll #NeurologyAwareness #PatientWorthy
    Mass General (MGB) Has Adopted Pretreatment DPYD T Mass General (MGB) Has Adopted Pretreatment DPYD Testing for Patients at risk from Deadly Toxicities. Read now at PatientWorthy.com
#PatientWorthy #DPYDTesting
    This week on Patient Worthy's site, we're putting This week on Patient Worthy's site, we're putting a spotlight on Epidermolysis Bullosa. We'll be sharing helpful information to explain what epidermolysis bullosa is, explore potential treatment options, and provide an opportunity for patients and caregivers to share their own personal stories with this condition. If you're interested in learning more or joining the conversation this week, visit patientworthy.com for the latest information! #EpidermolysisBullosa #ShareYourStory #PatientWorthy #RareDisease

If you have a story to share, click the link in our bio!
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