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    Patient Worthy Memes

    Tom Seaman is back, this time sharing his tips and Tom Seaman is back, this time sharing his tips and tricks to make life fuller and happier -- as someone living with dystonia, these are things that Tom utilizes to decrease the pain and suffering in his life.

Read more at patientworthy.com!

https://patientworthy.com/2025/05/29/steps-we-can-make-every-day-to-decrease-pain-and-suffering/

#PatientWorthy #Dystonia
    Gene therapy has been getting more attention and m Gene therapy has been getting more attention and more support -- and for good reason. Approval processes are becoming increasingly accelerated, increasing the development speed and quality of gene therapies, which provides a promising hope for the future of those living with rare or life-threatening conditions.

Read more at patientworthy.com!

#PatientWorthy #DiseaseResearch #GeneTherapy
    Your voice matters to us! Share your 3 emojis in t Your voice matters to us! Share your 3 emojis in the comments below - we'd love to hear from you! #RareDisease #YourVoiceMatters #ShareYourStory #PatientWorthy

If you're interested in sharing your story with a rare disease, click here the link in our bio!
    More than just a date on the calendar, Internation More than just a date on the calendar, International Women's Health Day is a powerful reminder that the health of women and girls is fundamental to the health of families, communities, and nations.
#womenshealthmatters #ourhealthourrights #patientworthy #May28th
    Resuming VYKAT™ XR Treatment Shows Significant B Resuming VYKAT™ XR Treatment Shows Significant Benefits for Prader-Willi Syndrome Patients, New Data Reveals. Read now at PatientWorthy.com
@PatientWorthy #Prader-WilliSyndrome #PWS #Prader-WilliSyndromeAwareness #VYKAT
    Happy National Senior Health & Fitness Day! Moveme Happy National Senior Health & Fitness Day!
Movement is for everyone—no matter your age. Whether it’s a walk in the park, a dance class, or gentle stretching at home, every bit of activity helps you feel your best. Remember: listen to your body, move safely, and celebrate your progress—no matter how small! #NationalSeniorHealthAndFitnessDay #SeniorHealth #SeniorFitnessDay #StayActive #HealthyAging
    Patient Worthy was honored to attend EURORDIS Rare Patient Worthy was honored to attend EURORDIS Rare Diseases Europe 2025 conference in Latvia.  On day 1, RareMinds released a Mental Health Toolkit for rare disease advocacy groups aimed at building resilience for leaders, patient and caregivers
#EURORDIS #PatientWorthy #EMM2025
    Behind every Gaucher disease diagnosis is a story Behind every Gaucher disease diagnosis is a story of strength, uncertainty, and resilience. Rare doesn't mean invisible! #GaucherDisease #RareDisease #ShareYourStory #PatientWorthy 

If you're interested in sharing your story, click the link in our bio!
    The FDA has just approved a new blood test to help The FDA has just approved a new blood test to help detect Alzheimer's Disease early, providing an option more accessible than PET scans and less invasive than spinal taps, both of which have been the primary testing methods historically.

Read more at patientworthy.com!

#PatientWorthy #Alzheimers #AlzheimersDisease #AlzheimersAwareness #AlzheimersDiseaseAwareness
    Life with cervical dystonia can be challenging, bu Life with cervical dystonia can be challenging, but Tim's here to share what helps him manage both physical and emotional aspects of life with CD!

Read more at patientworthy.com!
    Happy Saturday! We want to hear from you. Drop you Happy Saturday! We want to hear from you. Drop your ideas in the comments below!
    On World Schizophrenia Day, we raise awareness and On World Schizophrenia Day, we raise awareness and break the stigma around a complex mental health condition that affects millions worldwide. Understanding, compassion, and support can change lives because no one would face schizophrenia alone. #WorldSchizophreniaDay #MentalHealthAwareness #EndTheStigma #YouAreNotAlone #ShareYourStory

If you're interested in sharing your story, click the link in our bio!
    Before the Memorial Day weekend, remember to prote Before the Memorial Day weekend, remember to protect yourself from the sun☀️ 
Most skin cancers are caused by too much exposure to ultraviolet (UV) light. Unprotected exposure to the sun can cause damage to the skin, eyes, and immune system. Stay Safe!🕶️ 
#Skincancer #sunsafety #uvprotection #earlydetection #checkyourskin #Dontfryday #Whatnext #Patientworthy
    May is dedicated to Sturge-Weber Syndrome Awarenes May is dedicated to Sturge-Weber Syndrome Awareness—a rare, neurological disorder seen in 1 out of every 20,000 to 50,000 births. Awareness leads to understanding, and understanding leads to support 💜 #FactFriday #SturgeWeberSyndrome #SupportRare #AwarenessMatters
Have a healthcare journey to share? Check out the link in our bio!
    Chelsea's Hope, a research foundation dedicated to Chelsea's Hope, a research foundation dedicated to fighting Lafora Disease, has begun a study in an effort to find a treatment for this incurable, untreatable condition.

Read more at patientworthy.com!

#PatientWorthy #LaforaDisease #ChelseasHope
    Speaking up at the doctor’s office can feel over Speaking up at the doctor’s office can feel overwhelming—especially with a rare or chronic illness. Here are simple tips to help you advocate for yourself and get the care you deserve. 📝
What helps you feel empowered at medical visits? Share your advice below!
#PatientAdvocacy #RareDisease #ChronicIllness #SelfAdvocacy #PatientWorthy #MedicalCare #HealthcareTips #AdvocateForYourself
    Patient Worthy is honored to share Elena's story a Patient Worthy is honored to share Elena's story as a caregiver for her son Jaicion, who's living with Werdnig-Hoffmann disease, also known as Type-1 Spinal Muscular Atrophy.

Read more at PatientWorthy.com

#PatientWorthy#SMA#SpinalMuscularAtrophy#WerdnigHoffmanDisease
    “You don’t look sick.” For millions living w “You don’t look sick.” For millions living with rare and chronic illnesses, these words can be both frustrating and isolating. Invisible symptoms—like pain, fatigue, dizziness, and brain fog—impact daily life in ways that can’t always be seen from the outside.

Swipe through to learn what invisible symptoms really mean, how they affect daily life, and how we can all be better allies.🦓💙

If you can relate, share your story at the link in our bio or tag someone who should see this.

#invisibleillness #chronicillnessawareness #rarediseaseawareness #endthestigma #PatientWorthy #invisibledisabilities #AwarenessMatters #spooniesupport #believepatients #chronicpain #fatigue #brainfog #SupportNotJudgment
    This year, National EMS Week is being celebrated f This year, National EMS Week is being celebrated from 5/18-5/24! Take a moment to thank the first responders of your town or city, and consider supporting them year-round by getting involved with your community and raising awareness!

#PatientWorthy #NationalEMSWeek #EMS #EMT
    When someone you love is diagnosed with lupus, it' When someone you love is diagnosed with lupus, it's not always about having the right words - it's about showing up! Support can mean rest days, doctors appointments, or just being there when it's hard. #LupusAwarenessMonth #LupusWarrior #ShareYourStory #PatientWorthy 

If you're interested in sharing your story, click the link in our bio!
    We would love to introduce Elena, the mother and c We would love to introduce Elena, the mother and caregiver to her son Jaicion who is living with spinal muscular atrophy.
“When I was pregnant with Jaicion the doctors ran tests that they would run on any mother to be. My doctor called me a few days later stating that I tested “Positive” as a SMA (Spinal Muscular Atrophy) carrier. Now at this point so many thoughts are running through my head “SMA carrier? What is that? I’ve never heard of that before. No, I think the results are not accurate. No not me “
Stop by tomorrow to read Elena and Jaicion’s full story! 
#shareyourstory #spinalmuscularatrophy #sma #patientworthy
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