Rare Disease

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When Your Child With a Rare Disease Doesn’t Feel Brave

Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]

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Glenda McCoy

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Rare Disease

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How My Daughter's Rare Disease Opened My Eyes

When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]

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@takeamightyminute

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Share a self-care goal for the week.

Happy Monday, Mighty friends! 🌟

As we continue to balance our health needs with our daily to-do lists—and navigate the holiday season—it’s important to pause and take note of how we’ll care for ourselves amid everything going on around us.

What’s a self-care goal you have this week?

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

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TRUE or FALSE: Prioritizing self-care comes easy to me.

When we use the term "self-care," we may understand it to loosely mean the practice of setting time and energy aside for ourselves and our needs in order to promote wellness and manage our health. This may look different for everyone depending on how they define what works best for them, but in reality, actually engaging in self-care may be roadblocked by unavoidable or unforeseen circumstances.

What are your thoughts on prioritizing self-care? Is it easy for you? What kind of roadblocks are in your way?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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Thomas Ousterhout PhD

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@thomas_of_copenhagen

Conquer Your Mind 20h

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You already know you are what you eat, but have you ever realized you are also what you think?

If you want to learn more about this, check out my video by clicking on one of the links below.

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

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bbloom0329

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@bbloom0329

MightyTogether 2d

I'm new here!

Hi, my name is Bryan Bloom. I'm here because I would like to submit a story for Rare Disease Day, February 28, 2026. Our granddaughter, Emmie, battled Systemic Juvinelle Idiopathic Arthritis (SJIA) for eight years. Her younger sister, Ellie, was a perfect 10 for 10 bone marrow match and saved Emmie's life. The story highlights rare disease awareness, family resilience, and hope - perfect for your audience.

#MightyTogether

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chrisbacktolife

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@chrisbacktolife

Dysautonomia 2d

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My Body Is Breaking Down — and Here’s Why I’m Fighting for my Family #RareDisease #neurology #Dysautonomia #ChronicIllness

I’m Chris from Germany, waiting for clinical treatment at Rambam in Israel, and I’m looking forward to connecting with others about how to cope with symptoms that keep increasing — #Dysautonomia and many other symptoms. I have hope that they will be able to help me there.

Best regards, Chris
#PatientJourney #chronicwarrior #HopeInIsrael

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chrisbacktolife

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@chrisbacktolife

Medication 2d

I’m new here! I’m Christoph Muth, originally from Germany, 51 years old.

Hi everyone, my name is Chris.
I’m living with a very rare, severe neurological and autonomic multisystem disorder caused by a #Medication injury. My condition progressed dramatically over the past months.

I’m currently in Israel, and my treatment at Rambam (a leading neuro-immunology and rare disease center) officially starts on November 24/25.
This is my last chance to stabilize and stop the progression.

I’m here because I need connection, support, and visibility — especially from others living with very rare diseases, dysautonomia, neuroimmune disorders, or complex chronic illness.

If you know patient communities, nonprofits, journalists or networks that support rare neurological cases, I would be grateful for any contact. Every connection matters right now.

#ChronicIllness #Neurological
#MightyTogether #RareDisease #AutonomicDysfunction

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Thomas Ousterhout PhD

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@thomas_of_copenhagen

Conquer Your Mind 2d

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You are still breathing. You still have time. Healing does not expire.

You might feel like you missed your chance.

Like you should have healed by now, or started earlier, or figured everything out already.

But as long as you are breathing, it is not too late.

Every breath you take is proof that you still have time.

Time to begin again.

Time to rebuild.

Time to change direction.

You are not too old.

You are not too broken.

You are not too far behind.

You are alive, which means you still have possibility.

You can take one small step today, even if it feels tiny.

That is how every new beginning starts.

Your past is not the final chapter.

This is your moment.

Begin again.

What is one small beginning you can make today? Comment it here.

Also, if you're going through a tough time right now, I want you to know that I post daily mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

52 Small Things 3d

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What is a new tradition you want to incorporate into your life?

The great thing about traditions is this: We have the power to maintain the ones we like, but we also have the power to create fresh ones. And adopting new traditions can help us build our own sense of community, especially around what and who we value most.

A new tradition mighty staffer @sparklywartanks wants to incorporate in her life is having a family movie or game night at least once every month so she can see her siblings more regularly.

What about you?

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Rare Disease

Related Conditions?

When Your Child With a Rare Disease Doesn’t Feel Brave

How My Daughter's Rare Disease Opened My Eyes

Share a self-care goal for the week.

TRUE or FALSE: Prioritizing self-care comes easy to me.

You already know you are what you eat, but have you ever realized you are also what you think?

I'm new here!

My Body Is Breaking Down — and Here’s Why I’m Fighting for my Family #RareDisease #neurology #Dysautonomia #ChronicIllness

I’m new here! I’m Christoph Muth, originally from Germany, 51 years old.

You are still breathing. You still have time. Healing does not expire.

What is a new tradition you want to incorporate into your life?

Feed for Rare Disease

You are still breathing. You still have time. Healing does not expire.