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Know Rare | Rare Disease Advocacy

@knowrare

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We are all RARE 💙💛
We are a rare disease community made by people just like you. Get support & insights from real people living with rare disease.

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🚫 Avoid These Common Phrases When Supporting a Friend with a Rare Disease 🚫⁠
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When someone is newly diagnosed, the words we choose matter. While we always mean well, certain phrases can feel dismissive or unhelpful. Here’s what NOT to say—and what to say instead. ⬇️⁠
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💬 Small shifts in how we communicate can make a world of difference. ⁠
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Swipe through to learn more.⁠
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#RareDiseaseAwareness #RareDisease #RareDiseases #RareDiseaseAdvocacy #KnowRare by @knowrare

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2 years ago

April is MOGAD Awareness Month! Learn about a few opportunities for you to get involved, help spread awareness, and advance research in this rare disease!⁠
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Also, be on the lookout for more MOGAD resources and inspiring stories throughout this month!⁠
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#MOGAD #myelinoligodendrocyteglycoproteinantibodydisease #raredisease #rarediseaseawareness #rarediseaseadvocacy #KnowRare by @knowrare

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2 years ago

At age 23, Chris Anselmo, rare disease author of 'Hello Adversity,' was told by a neurologist that, within a decade, he’d lose the ability to walk.⁠
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For several months, rather than face reality, Chris retreated into denial. He believed he could eradicate his rare disease for good and never use adaptive equipment.⁠
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However, he eventually realized that his attempts to control the uncontrollable were failing: there was no way of stopping his disease progression. At that moment, Chris felt powerless. ⁠
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It wasn't until learning to accept what he could and could not control that he found purpose in his life through writing and sharing his rare disease journey. Follow Chris's story at @hello_adversity.⁠
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#helloadversity #mentalhealthmoment #mentalhealthawareness #selfcaresunday #mentalhealthmatters #raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #spoonie #spooniestrong #spooniesupport #spoonies #KnowRare by @knowrare

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2 years ago

It's today! Rare in Motion is tonight, and it's not too late to sign up. 💚

Join us for an evening of exercise, support and research news with people who get it. Doors open at 5 PM ET at Positive Exposure Gallery , a fully accessible venue.

Can't get out today? Join from wherever you are on the Health Haven app.

Sign up at the link in bio. See you tonight!

#RareInMotion #RareDisease #Neuromuscular #Neuroimmune by @knowrare

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10 hours ago

2 days left to register for Rare in Motion! It's free, in NYC or online.

Sun, Oct 18, 5–8 PM ET, at Positive Exposure Gallery (83 Maiden Lane, 4th Floor, NYC), a fully accessible venue. Can't make it in person? Join free on the Health Haven app.

Register free: link in bio.

#RareInMotion #RareDisease #Neuromuscular #Neuroimmune by @knowrare

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2 days ago

Hey NYC! Heading to the Disability Pride NYC Parade on Sunday, Oct 18? 🎉 Stop by Rare in Motion!

After the block party at Union Square wraps up, we're a short, accessible train ride away. Take the 4 or 5 from 14 St–Union Square to Fulton St (about 10 minutes, and both stations have elevators), then it's a few minutes to Positive Exposure Gallery.

Rare in Motion is an evening celebrating wellness for people living with rare neuromuscular or neuroimmune conditions, people with mobility issues, and the people who love them. Learn exercises you can do at home, talk openly about emotional health, and hear what's new in research.

📍 Positive Exposure Gallery, 83 Maiden Lane, 4th Floor, NYC (fully accessible venue)
🗓 Sun, Oct 18 · Doors 5 PM ET
📱 Can't make it in person? Join on the Health Haven app.

Sign up at the link in bio.

#DisabilityPrideNYC #DisabilityPride #RareInMotion #RareDisease #Neuromuscular #Neuroimmune by @knowrare

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3 days ago

Rare in Motion: why we chose Positive Exposure Gallery as our venue. Positive Exposure uses photography, film and art to change how people see disability and difference, and its walls are full of work that asks how we move, hurt and feel. We can't think of a better place to spend an evening moving, connecting and learning together.

Sun, Oct 18 · 5–8 PM ET · 83 Maiden Lane, 4th Floor (accessible venue, near the Fulton St station), or join live on the Health Haven app. Free to attend. Register: link in bio by @knowrare

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3 days ago

Meet the presenters at Rare in Motion: Shayan Lebastchi and DiCarlo Howard. Shayan is a physical therapist at Columbia University, and DiCarlo is a physical therapy student at LIU Brooklyn. Together they'll lead our exercise workshops: simple moves you can do at home, with options for every level of mobility.

Free, Sun, Oct 18, 5–8 PM ET, at our new location, Positive Exposure Gallery (83 Maiden Lane, NYC), or online. Register free: https://www.eventbrite.com/e/rare-in-motion-moving-forward-with-rare-neuromuscular-disease-tickets-2002235543409?aff=facebookorganic by @knowrare

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3 days ago

Meet the presenters: Amanda Coronado. Amanda lives with CIDP and speaks up for the rare disease community. At Rare in Motion, she'll share her story and what it takes to keep moving.

That's this Sunday! Free, Sun, Oct 18, 5–8 PM ET, at our new location, Positive Exposure Gallery (83 Maiden Lane, NYC), or online. Register free: link in bio. by @knowrare

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4 days ago

Meet the presenters: Chris Anselmo. Chris lives with limb-girdle muscular dystrophy and founded Hello, Adversity @hello_adversity. At Rare in Motion, he'll talk about emotional health while living with a neuromuscular condition, and what's helped him cope.

Free, Sun, Oct 18, 5–8 PM ET, at our new location, Positive Exposure Gallery (83 Maiden Lane, NYC), or online. Register free: link in bio. by @knowrare

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4 days ago

Meet the presenters at Rare in Motion this Sunday: Nina Wachsman. Nina is the founder and CEO of Know Rare. At Rare in Motion, she'll share what's new in rare disease research and how you can get involved.

Free, Sun, Oct 18, 5–8 PM ET, at our new location, Positive Exposure Gallery (83 Maiden Lane, NYC), or online. Register free: https://www.eventbrite.com/e/rare-in-motion-moving-forward-with-rare-neuromuscular-disease-tickets-2002235543409?aff=facebookorganic by @knowrare

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5 days ago

Meet the presenters at Rare in Motion! First up: Edward Gent. Ed lives with MMN and founded Health Haven @healthhavenuk , and he's hosting Rare in Motion this Sunday. Rare in Motion is a free evening of exercise, support and research news for people living with rare neuromuscular conditions and their families.

Free, Sun, Oct 18, 5–8 PM ET, at our new location, Positive Exposure Gallery (83 Maiden Lane, NYC), or online. Register free at the link in bio. by @knowrare

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6 days ago