• Noticias de Enfermedades Raras
  • [email protected]
Facebook Instagram Linkedin Pinterest Twitter
  • Blefaroespasmo
  • Cáncer de Orofaringe
  • Collaborative Content On Patient Worthy
  • Conoce a nuestroscolaboradores
  • Contact Us
  • Contribuye
  • Deficiencia de Proopiomelanocortina
  • Hiponatremia
  • Hipoplasia Pontocerebelosa
  • Library
  • Linfoma Anaplásico Sistémico de Células Grandes
  • Linfoma Vitreorretiniano
  • Lipodistrofia Generalizada Adquirida
  • Partners
    • AEH Juvenil
    • Instituto de Genómica Rara
    • Mission: Cure
  • Patient Worthy Content Submission Guidelines
  • Patient Worthy FAQs
  • Patient Worthy Writing Prompts
  • Patient Worthy’s Memes
  • Rare Diseases and Conditions
  • Rare Patient News Spanish
  • Share Your Story
  • Síndrome de Carcinoma Nevoide de Células Basales
  • Sobrenosotros
  • Temblor Esencial
  • Menú
  • Blefaroespasmo
  • Cáncer de Orofaringe
  • Collaborative Content On Patient Worthy
  • Conoce a nuestroscolaboradores
  • Contact Us
  • Contribuye
  • Deficiencia de Proopiomelanocortina
  • Hiponatremia
  • Hipoplasia Pontocerebelosa
  • Library
  • Linfoma Anaplásico Sistémico de Células Grandes
  • Linfoma Vitreorretiniano
  • Lipodistrofia Generalizada Adquirida
  • Partners
    • AEH Juvenil
    • Instituto de Genómica Rara
    • Mission: Cure
  • Patient Worthy Content Submission Guidelines
  • Patient Worthy FAQs
  • Patient Worthy Writing Prompts
  • Patient Worthy’s Memes
  • Rare Diseases and Conditions
  • Rare Patient News Spanish
  • Share Your Story
  • Síndrome de Carcinoma Nevoide de Células Basales
  • Sobrenosotros
  • Temblor Esencial
    • Join PW

    Patient Worthy’s Memes

    1. Inicio>
    2. Patient Worthy’s Memes

    Patient Worthy Memes

    The NIH has granted Stanford University a grant to The NIH has granted Stanford University a grant to continue their research on a new medication aimed at helping recipients of lung transplants. Read more at patientworthy.com!
    Understanding inheritance helps families plan, pre Understanding inheritance helps families plan, prepare, and seek the right support. Follow along on patientworthy.com for more information about Hemophilia B. If you have a story to share, click the link in our bio.
#HemophiliaAwareness #RareDisease #Genetics #PatientWorthy #ShareYourStory
    A recent study suggests Vitamin D may play an impo A recent study suggests Vitamin D may play an important role in the prevention of Alzheimer's disease and dementia. Read more at patientworthy.com!
    Self-care is vital for health and healing—whethe Self-care is vital for health and healing—whether you’re navigating your own journey or supporting someone else’s. This month, let’s uplift patients and caregivers by sharing self-care ideas and encouragement. #SelfCareAwarenessMonth #PatientSupport #CaregiverCare #SelfCareisHealthCare
    A new treatment -- Hympavzi, designed to treat hem A new treatment -- Hympavzi, designed to treat hemophilia -- has consistently shown promising results for treating both hemophilia A and hemophilia B, with inhibitors. Read more at patientworthy.com!
    Patient Worthy is proud to share this article from Patient Worthy is proud to share this article from our friends at Courageous Parents Network, highlighting the importance of proactivity as a caregiver and the resources available. Read at patientworthy.com!
    "Congenital" means present from birth - and for ma "Congenital" means present from birth - and for many living with a rare disease, it's where the journey begins. Understanding congenital conditions is key to early diagnosis, support, and hope for those affected #RareWordOfTheWeek #RareDisease #PatientWorthy
    Patient Worthy is looking for individuals who are Patient Worthy is looking for individuals who are interested in sharing their experiences with Hemophilia B. Be the reason someone feels seen, supported, and inspired! Share your story with us at the link in our bio.
If you're interested in learning more or joining the conversation this week, visit patientworthy.com for the latest information.
#HemophiliaB #Hemophilia #PatientWorthy #ShareYourStory
    Pharmacy benefit managers (PBMs) play an important Pharmacy benefit managers (PBMs) play an important role as middlemen in the pharmaceutical industry, yet some believe that reform of PBMs' roles and policies is necessary to better help patients. Read this opinion piece here:

https://patientworthy.com/2025/09/10/the-impact-of-pharmacy-benefit-managers-and-most-favored-nation-policy-on-biosimilar-adoption-and-healthcare-costs/
    September is STXBP1 Awareness Month! Join us in sp September is STXBP1 Awareness Month! Join us in spreading hope, knowledge, and support for those affected by STXBP1-related disorders. Every story matters and every voice counts! #STXBP1AwarenessMonth #HopeForSTXBP1 #RareDisease #ShareYourStory #PatientWorthy

If you're interested in sharing your story, click the link in our bio!
    Hemophilia B affects the blood’s ability to clot Hemophilia B affects the blood’s ability to clot and can lead to serious bleeding—even from small injuries. But with the right care and support, those living with this “Christmas disease” can thrive! Learn the basics, symptoms, and why early diagnosis matters. #hemophiliaawareness #hemophiliab #factorix #ChristmasDisease #PatientWorthy
#shareyourstory with us at the link in our bio!
    Did you know? Newborn screening can identify 60+ s Did you know?
Newborn screening can identify 60+ serious health conditions before they cause harm. 
Early testing= early treatment= healthier futures.
This September, spread the word! Screening saves lives.
#EveryBabyCounts #NewbornScreeningAwareness #LifeSavingTests #PatientWorthy
    Patient Worthy is proud to republish this caregive Patient Worthy is proud to republish this caregiver story-share from our friends at the Courageous Parents Network, originally by Maria Hopfgarten about her son Jacob's journey with mitochondrial disease. Read at patientworthy.com!
    💚 September is Suicide Prevention Month 💚 Th 💚 September is Suicide Prevention Month 💚 This month, we raise awareness and remind everyone that you are not alone. Simply checking in or sharing a kind word can save a life. If you or someone you know is struggling, help is available. 🩵Call or text 988 at any time 🩵 

#Suicidepreventionmonth #mentalhealth #PatientWorthy
    Researchers are finding remarkable and promising r Researchers are finding remarkable and promising results in patients who were treated with a new gene therapy aimed at treating Hemophilia B. Read more at patientworthy.com!
    Moebius syndrome is a rare condition that affects Moebius syndrome is a rare condition that affects facial movement and expression. Raising awareness helps people understand the social and emotional challenges it can create, promoting empathy and support! #RareDiseaeOfTheWeek #RareDisease #ShareYourStory #PatientWorthy
    FOLLOW PATIENT WORTHY ON INSTAGRAM

    Nosotroscreemos que lospacientes de enfermedadesraras son personas, no undiagnóstico. A través de la educación, conciencia, y unpoco de humor – ayudamospacientes, suscuidadores y simpatizantesbrindándolesnoticias e historiasrelevantesya menudo inspiradoras.

    Nuestroobjetivo escompartirhistorias, cultivar unacomunidad, proporcionanlosúltimosdescubrimientosmédicos, conectar a las personas, y promover la producción de informacióndigna para pacientes.¡Ayúdanosaalcanzarestosobjetivoscompartiendo con nosotros un pocosobreti!

    ¡Trabajemosjuntos!

    Asociarse con nosotros
    Presentarunahistoria
    Seruncolaborador

    Mantener al día

    Suscríbete a nuestroboletín
    Averiguarsobreeventosraros
    Inspírate con nuestros memes

    Aprendemás

    Sobrenosotros
    Enfermedades y condicionesraras
    Términos de uso
    Política de privacidad

    © Copyright Patient Worthy

    Sign Up With a Patient Worthy Account and Share Your Rare Story

    - OR -

    Sign Up For Our Patient Panel

    Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

    More Info

    We're Happy You're Here!

    What best describes you when it comes to rare disease? (check all that apply)

    What rare disease(s)/conditions are most important to you?

    Visit Home Page or

    Thank you for signing up for a Patient Worthy Account!

    Have a rare disease story to share? Let us know

    Share Story

    - OR -

    Sign Up For Our Patient Panel

    Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

    More Info