Rare Disease Day

Join the Conversation on
Rare Disease Day
756 people
0 stories
105 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Rare Disease Day
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    #RareDisease Day!

    To quote the absolute legend which is Albus Dumbledore
    « ⚡️ 🦉 🧙‍♂️ It is our choices...that show what we truly are, far more than our abilities. «

    And on this #RareDiseaseDay and through out this whole month .
    I’ve taken time to DEEPLY admire the courage it takes to survive the unimaginable ❤️🦓.

    Rare disease takes you , and throws you in the deep end of a pool of when you never thought you needed to learn how to swim .
    Enlist you in a war you never signed up for .

    Once it comes into your life ,
    It changes EVERYTHING .

    And I use to think continuing to go forward , wasn’t a sign of bravery .. but a means of survival.

    Until I had the realization that .
    Some people don’t choose to go forward .

    Some get thrown in the deep end and let the water consume them .

    But if you are still fighting .
    If you are trying your hardest to stay .
    If you are paddling and paddling in the deepest and darkest of waters
    , even when it feels like you aren’t moving anywhere .

    That is an act of bravery .
    Continuing .. continuing despite everything against you . Fighting to survive against the impossible ans unavoidable may be one of the bravest things you can do .

    Never forget just how magic 🪄 you are ❤️🦉.

    Btw how AMAZING is this shirt I had a friend custom make for me ?! 😍 I’m OBSESSED.
    #smileon🐷 #spoonie #chronicillnes #cvid #ivig #RareDiseaseDay #rarediseaseawareness #zebra #nord #harrypotter #wegowarrior #themighty #patientadvocate #uctd #gastroparesis #autoimmunewarrior #supplimentaloxygen

    Post
    See full photo

    Join a Rare Disease Day Event!

    Join Kelly's Instagram Takeover: bit.ly/3Mb2QhS

    Today is Rare Disease Day! Rare Disease Day is a global campaign that aims towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with rare diseases.

    To celebrate, patient advocate, ambassador, and pre-nursing student Kelly Baker is taking over our Instagram today. Kelly lives with Ehlers-Danlos syndrome as well as chronic intestinal pseudo-obstruction. She's on a feeding tube and TPN through a central line. During the takeover some topics she'll be touching on:

    🦓 Mental health tips for growing up with a chronic condition, including navigating the difficult emotions that come with being chronically ill.

    🦓 Ways to find a therapist who understands your health and you as a whole person, intersections and all.

    🦓 How you can self-advocate especially around doctors when you know you need different or better care.

    Kelly will be taking over from 9:30am CST - 11:30am CST where you can chat with her in the stories. Also, tune in at 10:30am CST to join her for an Instagram Live.

    #RareDisease #RareDiseaseDay #MightyEvents #EhlersDanlosSyndrome #ChronicIllness #AutoimmuneDisease

    Question
    See full photo

    How are you honoring Rare Disease Day?

    Rare Disease Day is a global campaign which aims toward equity in social opportunity, health care, and access to diagnosis and therapies for people living with rare disease.

    In honor of Rare Disease Day, we’re here to spread some resources and support to anyone living or who loves someone with a rare disease.

    📚 About Rare Disease Day: www.rarediseaseday.org

    From The Mighty community:

    🦓 Rare Weekly Newsletter: bit.ly/3ATKqgm

    📍 Living With Rare Disease Group: bit.ly/3snIgTu

    From our partner:

    🤝 National Organization for Rare Disorders (NORD): rarediseases.org

    #RareDisease #RareDiseaseDay #ChronicIllness #ChronicPain #MightyTogether #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache #SickleCellDisease

    Post
    See full photo

    Warning signs for a primary immunodeficiency #RareDiseaseDay

    This day is special for many of us because it is one of the few days we feel heard. I wanted to raise a little awareness and thought I would share the warning signs for primary in adults.

    Known Immunodeficiencies in your family.

    4 or more infections that have to be treated with antibiotics in one year(e.g. ear infection, bronchitis, sinus infection, pneumonia,…)

    Recurrent infections that need severely prolonged antibiotic treatment.

    Two or more lifethreatning bacterial infections (e.g. sepsis, meningitis, …)

    Two or more radiologically confirmed pneumonias in three years.

    Infections with normally non-dangerous bacteria/ viruses.

    Infections in unusual locations.

    Please note that the warning signs are different in children. This is in no way meant to be for self diagnosis but rather to inform you about it.
    #RareDisease #RareDiseaseDay #PrimaryImmunodeficiency

    Post
    See full photo

    National Rare Disease Day #RareDisease #RareDiseaseDay

    Being an alternative styled, open minded, universal omnist… I knew from a young age I would be rare of sorts. I never thought for a moment my health conditions would add to that rarity. #EhlersDanlosSyndrome and #FunctionalNeurologicalDisorder with #AutonomicDysfunction

    May we all continue to bare our stripes with pride till no condition is left untreated or understood!

    Post

    Rare Disease Day 2022 Part One #RareDisease #rarediseaseawareness #RareDiseaseDay #february28 #NORDRareDiseaseDay #eurodis #Disability

    “Alone we are rare. Together we are strong. ” This is the trademark for the National Organization for Rare Disorders, Inc. (NORD), US Sponsor of International Rare Disease Day. NORD is one of over 66 National Alliances (rare disease patient advocacy organizations) representing over 100 countries and regions all over the world, referred to as “Rare Disease Day Partners.” The month of February was designated “Rare Disease Awareness Month” by the European advocacy group “EURODIS” in 2008; that year, the first International Rare Disease Day was held on February 29. EURODIS acts as the central coordinator among the “Rare Disease Day Partners,” patients with rare diseases, and the global community at large to create unified messages and visual materials to raise awareness for rare diseases and the individuals who live with them. “Rare Disease Day” is a recognized day created to bring awareness and subsequent empowerment, community, and equity to over 300 million people worldwide fighting any of approximately 6,000 known rare diseases. This February marks the 15th “Rare Disease Awareness Month,” and February 28 will be the 15th annual “Rare Disease Day.” Ultimately, the objectives of Rare Disease Day are to ensure equal access to treatment and healthcare, to create more equitable social opportunities for those fighting rare diseases (higher education, jobs, etc.), and to simultaneously reduce stigmatization through social inclusion. Furthermore, through raising awareness, EURODIS and its Rare Disease Day Partners aim to find means to fund research for more effective and life-saving therapies as well as to minimize the time it takes to diagnose a person with any given rare disease. 
 
“Rare Disease Day” utilizes the narratives of “real life Rare Disease” “heroes” to identify common challenges faced by those with rare diseases to connect patients as well as their caregivers into a strengthened global community. For 2022, there are 16 “hero” community members from around the world who have agreed to share their stories with the world for the purposes of rare disease advocacy (rarediseadeday.org). Every Rare Disease Day bas a specific “Call to Action;” for 2022, the Call to Action has been named “Share Your Colours;” a means of representing individuals with rare diseases utilizing vibrant colors to express positivity, strength, and diversity of the individuals who make up the 300 million rare disease patients worldwide. By utilizing art and simple creative images, this “Rare Disease Day” will become accessible to many more people throughout the world.

    Please read Part Two!

    Post
    See full photo

    #Showyourstripes on #RareDiseaseDay2021

    When it comes to illness.. it’s not Always black and white 🦓.

    It is finally #RareDisease day. !

    I made it rare disease week oh my social media . And considering #RareDisease week to be the COOLEST idea I’ve ever had . Because the rare disease community has taught me SOO much.

    Seriously to those who have commented and shared there stories with me this week .
    Thank you ❤️ thank you so freaking much .

    Through the years I’ve shared my story , and my life with rare disease .

    And I can’t tell you how much it changed my life,
    When I found this Incredible community and learned I wasn’t alone .

    I’m constantly bolstered by the strength , courage. Determination , support, and love in the chronic illness and rare disease community

    You all through the great things you do.
    Remind me , though my body may be broken .
    I am capable of great things ❤️:

    As the 1 year anniversary of COVID hits
    And my 5 year anniversary of going to the Mayo Clinic
    ( you know where they litterally sent me home to die with the words “ we can’t help you.. enjoy what life and quality of life you have left “ )
    And 4 year anniversary of my cancer diagnosis #dfsp

    I’ve been reflecting on how rare disease ... and illness in general has changed my life , my path and I’m perspective

    And at times my soul has ached thinking about who I could have been.
    What I may loose to do my illness

    But at moments .. so incredibly grateful for who I have become.
    And what I have gained .

    Because we are not the darkness. We are not the things that have broken us .. that have damaged us .

    We are the light , that refused to stop shining . Despite of everything blowing against it.

    Stay fighting , be strong. #careaboutrare and always #smileon🐷

    #spoonie #Rare #RareDiseaseDay #nord #hope #itsinmygenes #chronicillness #chronicpain #faith #trust #perspective #mightytogether #Showyourstripes