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    Managing EB often goes far beyond skincare alone. Managing EB often goes far beyond skincare alone. Daily routines, nutrition support, pain management, wound care, and preventing complications can all become part of life with epidermolysis bullosa. 💙
While every experience is different, raising awareness about the realities of treatment and ongoing care can help foster more understanding and support for the EB community.

If you're interested in sharing your story with Epidermolysis Bullosa, click the link in our bio to learn more!

#EB #EpidermolysisBullosa #EpidermolysisBullosaAwareness #RareDisease #ShareYourStory #PatientWorthy
    🩵💚May 17th is Neurofibromatosis Awareness Day! Ne 🩵💚May 17th is Neurofibromatosis Awareness Day!

Neurofibromatosis (NF) refers to a group of genetic conditions that cause tumors to grow in the brain, spine, and on nerves throughout the body. 

NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN). NF impacts everyone differently and may lead to blindness, deafness, bone abnormalities, disfigurement, learning challenges, disabling pain, or cancer.

About half of people with NF inherit the condition from one of their parents. The other half develops NF due to a spontaneous change in the gene. There is no cure for NF1 or SWN, but treatments are available to help manage symptoms and address other conditions that may develop.

On May 17th, wear blue and green in honor of those living with and affected by NF, and share your story with us to help spread awareness about this rare condition. Every action helps build progress for the NF community!

Click the link in our bio to share your story!

#Neurofibromatosis #NFAwarenessDay #NF1 #NF2 #PatientWorthy

Sources: Children's Tumor Foundation & NIH
    🧠 International Oligodendroglioma Day 🧠 Today we r 🧠 International Oligodendroglioma Day 🧠
Today we raise awareness for oligodendroglioma, a rare type of brain tumor, and stand with the patients, caregivers, and families navigating its impact every day.
By sharing stories, supporting research, and spreading understanding, we help shine a light on a condition that deserves greater visibility and compassion.
Together, we can amplify voices, foster connection, and support hope within the brain tumor community.
#InternationalOligodendrogliomaDay #Oligodendroglioma #BrainTumorAwareness #RareDiseaseAwareness #PatientWorthy #ShareYourStory
    Today on HAE Awareness Day, we’re recognizing the Today on HAE Awareness Day, we’re recognizing the strength of those living with hereditary angioedema (HAE) — a rare condition that can cause sudden, painful, and unpredictable swelling attacks.
For many, HAE impacts far more than what people can see. It can affect daily routines, relationships, work, school, and the simple comfort of knowing what tomorrow will look like.
Today is about spreading awareness, encouraging understanding, and reminding the HAE community that their experiences matter and their voices deserve to be heard.

#HAEAwarenessDay #HAEAwareness #HAE #Active4HAE #PatientWorthy
    One bite can change everything. For 33 million Am One bite can change everything.

For 33 million Americans with food allergies, “just try it” isn’t harmless. It’s anaphylaxis. It’s ER visits. It’s reading every label, carrying epinephrine everywhere, and teaching everyone around you how to save your life.

Food Allergy Awareness Week is about more than awareness. It’s about action:

Ask before you share food.
Read labels, even if you’ve bought it before.
Take “no thank you” seriously.
Learn the signs of anaphylaxis and how to use an EpiPen.
Never pressure someone to eat something.

Inclusion tastes better than exclusion. And safety should never be optional.

#FoodAllergyAwarenessWeek #Anaphylaxis #PatientWorthy
    TSC is a genetic disorder that causes benign tumor TSC is a genetic disorder that causes benign tumors to grow in the brain, heart, kidneys, lungs, skin, and eyes. 1 million people worldwide live with it. Many spend years searching for answers before diagnosis.

TSC Global Awareness Day is about changing that. See the signs. Fund the research. Support the families navigating appointments, medications, and uncertainty every single day. Because awareness creates earlier diagnosis. Earlier diagnosis creates better outcomes. And no one should face TSC alone.

#TSCGlobalAwarenessDay #TuberousSclerosisComplex #PatientWorthy
    A diagnosis can change everything — but for indivi A diagnosis can change everything — but for individuals living with Epidermolysis Bullosa (EB), getting answers is often the first step toward proper care, support, and improved quality of life. Because EB affects the skin on a genetic level, specialized testing helps identify the exact type, guide treatment decisions, and monitor complications early. Awareness and education matter, especially for rare conditions that are often misunderstood. Every diagnosis tells a story, and every story deserves understanding, advocacy, and hope. 💙
#EpidermolysisBullosa #EBAwareness #PatientWorthy
    What is MPS? Mucopolysaccharidoses (MPS) are lysos What is MPS?
Mucopolysaccharidoses (MPS) are lysosomal storage diseases caused by the body’s inability to produce enough of a specific enzyme needed to break down long chains of sugar molecules called glycosaminoglycans (GAGs). When these molecules are not properly broken down, they accumulate in cells throughout the body, leading to progressive damage affecting multiple organs and systems. 
 • MPS can affect the brain, heart, lungs, bones, joints, eyes, hearing, and liver
 • Symptoms and severity vary widely by type of MPS and among individuals
 • Many forms are progressive, and early symptoms can be subtle or mistaken for common conditions—making awareness and early diagnosis critical
#MPSAwarenessDay #Mucopolysaccharidosis #RareDiseaseAwareness #PatientWorthy
    Still trying to figure out how to unsubscribe... Still trying to figure out how to unsubscribe...

#ChronicIllness #ChronicIllnessHumor #RareDisease #MedicalHumor #PatientWorthy
    The Quiet Revolution: When Hospitals Stop Being Yo The Quiet Revolution: When Hospitals Stop Being Your Second Home. Read now at PatientWorthy.com
#PatientWorthy #SLE #SystemicLupusErythematosus
    On May 14th, light a blue candle or porchlight in On May 14th, light a blue candle or porchlight in recognition of MEF2C Awareness Day! 

May 14th is more than a date, it's a symbol! The location of the MEF2C gene—5Q14.3 on the 5th chromosome—makes May 14th the perfect day to raise awareness and inspire action. On this day, we spark awareness, ignite change, and radiate kindness!

Want to raise awareness? Share your story with us:  https://bit.ly/4dV7gru

#LightUpBlueforMEF2C #MEF2C #PatientWorthy
    Health isn't just the absence of illness. It's hav Health isn't just the absence of illness. It's having the energy to chase your dreams, the strength to set boundaries, and the knowledge to advocate for your body.
National Women's Health Week is your reminder: You deserve care that listens. Screenings that catch things early. Mental health that gets the same priority as your physical health. Rest without guilt.
Schedule the appointment. Ask the questions. Move your body because you love it, not punish it. Check on your friends. Check on yourself. Your health is not a luxury. It's the foundation everything else is built on.
#NationalWomensHealthWeek #WomensHealth #PatientWorthy
    Today we’re recognizing Apraxia Awareness Day and Today we’re recognizing Apraxia Awareness Day and helping bring more visibility to a condition that can impact communication, movement, and everyday life in ways many people may not realize.
Apraxia can make it difficult for the brain to coordinate and carry out purposeful movements, even when the person knows exactly what they want to say or do.
Awareness matters because behind every diagnosis is someone navigating challenges that often go unseen — with resilience, determination, and strength every step of the way.

#ApraxiaAwarenessDay #ApraxiaAwareness #Apraxia #PatientWorthy
    Epidermolysis Bullosa (EB) is more than fragile sk Epidermolysis Bullosa (EB) is more than fragile skin—it’s a rare genetic condition that can affect the body in many ways. From painful blistering to internal symptoms, EB looks different for everyone, but awareness starts with understanding.
Swipe through to learn more about the symptoms and causes of EB, and why even everyday friction can have a serious impact for those living with this condition. Education helps build empathy, earlier recognition, and stronger support for the EB community.
#EpidermolysisBullosa #EB #RareDiseaseAwareness #InvisibleIllness #PatientWorthy#ShareYourStory #RareDiseaseCommunity
    Solving Cell Therapy's Dirty Secret: How One Partn Solving Cell Therapy's Dirty Secret: How One Partnership Could Unlock Consistent Treatments. Read now at PatientWorthy.com
#PatientWorthy #EB #EpidermolysisBullosa #INmune Bio #Anthony Nolan
    Living with epidermolysis bullosa can feel isolati Living with epidermolysis bullosa can feel isolating, but your story could be the reason someone else feels understood. At Patient Worthy, we believe every experience matters and has the power to bring comfort, connection, and awareness to others navigating similar challenges. If you’ve been diagnosed with EB, we’d be honored to help share your journey and amplify your voice. Click the link in our bio to get started!

#EpidermolysisBullosa #EpidermolysisBullosaAwareness #RareDisease #RareDiseaseAwareness #ShareYourStory #PatientWorthy
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