Kerry L. Wong 🦋 Float Like a Buttahfly

YES.
And I wouldn't be surprised if that's why they tried to shut down Talarico's interview on Colbert. They knew that would give him a huge boost.

I'm so sorry ... it is awful how often & how easily they play games with our lives to save a few bucks. 🫂🦋

WHAT PATIENTS WISH DOCTORS KNEW "5 minutes of their day can affect our life for months or years. They're only seeing a small picture into our daily reality. Sometimes symptoms are hard to describe, but that doesn't mean they aren't real. O We are not choosing this, and we would do anything to get better. A little empathy goes a long way. We hope they'll treat us like they'd treat a family member they love." Credit: Chronic Love Club

WHAT PATIENTS WISH DOCTORS KNEW

"5 minutes of their day can affect our life for months or years.

They're only seeing a small picture into our daily reality.

We hope they'll treat us like they'd treat a family member they love."

Credit: Chronic Love Club
#MySeveralWorlds #MyChronicLife

Bitmoji of me holding a package labeled "all my love and support"

Team Phantom celebrating on jumbotron after advancing to the Unrivaled Finals

Natasha Cloud celebrating on jumbotron after advancing to the Unrivaled Finals

Team Mist celebrating on jumbotron after advancing to the Unrivaled Finals

Breanna Stewart speaking too Ria on jumbotron after advancing to the Unrivaled Finals

Just got home from #Unrivaled semifinals at Barclay ... WOW!!!

Couldn't script it better - both #NYLiberty🗽 players advance!
Much love for #Cloud9 & #StewYork
Wtg #GhostGang
Amazing comeback for #Misties

Two unbelievable games ...
Great night for NYC
Great night for women's sports!!
🦋💚🏀

The glibness. The indifference. The carelessness. The utter lack of planning for a war against a country of 90M. The sickness of a man who acts on whim that will kill thousands not hundreds. The horror of a regime that enables this sickness. The broken body politic that votes in such malignancy.

🚨 Reminder: Don't miss this LIVE Webinar!

Research Advocacy 101 -- Your Voice Matters in Healthcare Policy

🗓️ Thursday March 5th
🕑 6:00 PM ET
➡️ Register today: zurl.co/jjTu7

#AiArthritis #PatientAdvocacy #ResearchAdvocacy #HealthcarePolicy #LiveWebinar

How come “How are you going to pay for it?” is never asked about endless war?

Details for Flavor Flav’s massive US women’s Olympian celebration in Las Vegas revealed Flavor Flav secured VIP treatment for his “She Got Game” weekend to celebrate all of the U.S. women olympians, taking place this summer in Las Vegas.

In a world of Snoop Doggs, be a Flavor Flav. 🤟😎
nypost.com/2026/02/27/s...

FLaB background with Bitmoji of me below a Happy Rare Disease Day banner, pointing to NORD/RDD graphic featuring a heart filled with positive words; Text above the heart reads More ______ than you can imagine

From NORD:
“Equity for the #RareDisease community can mean many things: respect, visibility, advocacy, breakthroughs… and so much more. What fills in the blank for you?”

For me, it’s hope.

I hope your RDD - and the year to come - are filled with more [everything wonderful] than you can imagine.
🦓🦋

Sharing our rare disease stories is vital for building community Columnist Kerry Wong explains how reading and hearing about others' experiences inspired her to share her own rare disease story.

Here's one more #RareDiseaseDay column I wrote for Sarcoidosis News - this one from 2024!
🦓🦋
#RareDisease #community #PatientStories #sarcoidosis #ZebraStrong
sarcoidosisnews.com/columns/shar...

Kaleidoscope background with Amazon review for Kaleidoscope: Rare Disease Stories, which reads "This is an excellent compilation of stories from real people in the Rare Disease Community. Reading their stories is a great way to gain a rich understanding of the burden of living with a chronic illness. The author/editor does a great job at selecting the right stories to get the full picture out there."

The reviews are in! Here's what one reader had to say.

Have YOU gotten your copy of Kaleidoscope #RareDisease Stories? Please take a moment to share your review.

Not yet? Order yours on Amazon sites worldwide (US: a.co/d/1qhe4Je). Proceeds donated to NORD.
~🦋
#KaleidoscopeRare #ZebraStrong🦓

#RareDiseaseDay
a.co/d/04AJB5Y1

Screenshot of LinkedIn post from National Organization for Rare Diseases. Text reads: NORD is thrilled to announce a new content partnership with Bionews, Inc. to expand educational and support resources for the #RareDisease community. The first initiative is launching today with "Keepin' It Rare: Let's Talk Therapy with Dr. Al Freedman," a five-part video series featuring expert insights and real experiences from patients, caregivers, and advocates about the unique #MentalHealth challenges of rare disease life. Learn more about this initiative and how you can watch the series here: https://Inkd.in/eMHZNYZM #RareDiseases #Caregiver #Caregiving #Therapy #NORD #Bionews #KeepinItRare #MentalHealthMatters #SelfCare #RareDiseaseDay

Promo for Bionews/NORD collaboration features logos, 6 headshots, and text that reads: KEEPIN' IT RARE Let's Talk Therapy with Dr. Al Freedman Brought to you in partnership NORD bionews Presenting Keepin' It Rare, a powerful 5-part video series featuring Dr. Al Freedman. These insightful, one-on-one conversations with patients, caregivers, and advocates, tackle the unique mental health challenges of the rare disease community. Featuring Dr. Al Freedman Rare Disease Therapist DAY 1 Introducing Dr. Al with Kiersten Riggs DAY 2 The Patient Experience with Kerry Wong DAY 3 The Caregiver Journey with Danita LaShelle DAY 4 The Rare Community with Brad Dell DAY 5 Community Questions with Brandi Lewis

So excited to be a part of this important project. Living with a #RareDisease has a huge impact on our #MentalHealth. Tune in to Bionews, Inc. and National Organization for Rare Disorders all week long!
~🦋
#RareDiseaseDay #ChronicIllness #SpoonieSky
rarediseases.org/bionews-keep...

FLaB promo shows me holding a copy of Kaleidoscope book, with RDD/NORD logos and QR code. Text reads: Float Like a Buttahfly presents Kaleidoscope RARE DISEASE Stories TOLD BY THE PEOPLE WHO LIVE THEM Featuring: 60 Stories 44 Patient Writers 3 Caregiver Writers • 59 Rare Diseases 4 Countries Ages 2- 76 Forward by Karen Duffy Lambros, NY Times best-selling author of Model Patient, Backbone, and Wise Up Proceeds donated to NORD National Organization for Rare Disorders

A great read for #RareDiseaseDay (or any day):

Kaleidoscope #RareDisease Stories
Featuring:
60 Stories
44 Patient Writers
3 Caregiver Writers •
59 Rare Diseases
4 Countries
Ages 2- 76

Proceeds donated to NORD
~🦋🦓
a.co/d/dsmrBw5
#ChronicIllness #ShowYourStripes #SpoonieSky #ZebraStrong

Honoring this year’s Rare Disease Day any way we can Columnist Kerry Wong, who often feels trapped in her body, encourages members of the community to observe Rare Disease Day any way they can.

Looking back at last year's #RareDiseaseDay
sarcoidosisnews.com/columns/hono...
🦓🦋

FLaB background with NORD/RDD zebra graphic. Text reads Today is Rare Disease Day Show your stripes for the 1 in 10 Americans with a rare disease

FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? Currently, there are more than 10,000 rare diseases identified.

FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? More than 95% of rare diseases are still without an FDA-approved treatment.

FLaB promo for Kaleidoscope: Rare Disease Stories features a "Rare Disease Day" banner and Bitmoji of me holding print and e-book versions. Text reads Kaleidoscope: Rare Disease Stories Told by the people who live them Proceeds donated to NORD National Organization for Rare Disorders Alone we are rare. Together we are strong.

It's #RareDiseaseDay!
DID YOU KNOW ... ?
🦓 Currently, there are more than 10,000 #RareDiseases identified.
🦓 More than 95% are still without an FDA-approved treatment.
🦓 Proceeds from Kaleidoscope:Rare Disease Stories are donated to NORD
🦋
@rarediseaseday.bsky.social #ShowYourStripes #ZebraStrong

How rare disease advocates can raise awareness of other... Columnist Kerry Wong explains how rare disease communities can join forces to raise awareness and amplify one another's voices.

Looking back ...
I wrote this one for #RareDiseaseDay back in '23
🦓🦋
sarcoidosisnews.com/columns/rare...

Bionews: The Leading Digital Health Solutions Company Bionews is a digital health solutions company and rare disease network that provides trusted information, news, and connections.

This #RareDiseaseDay, Bionews is bringing together voices from across the #RareDisease community for a weeklong series of powerful conversations covering #MentalHealth, #caregiving, #advocacy, and more.
🦓🦋
bionews.com/rare-disease...

Your Chance to Win | Bionews, Inc. In honor of #RareDiseaseDay, Bionews is proud to introduce the Community Connection Scholarship, and the response has been incredible, with over 200 completed applications. We will award two rare dis...

A great opportunity for #RareDisease advocates!

Bionews Community Connection Scholarship
🦓 Up to $2,500 to attend the advocacy or medical conference of your choice
🦓 Covers registration, travel expenses, and hotel accommodations

bionews.com/community-sc...
#RareDiseaseDay #PatientAdvocacy

Why Zebras? A fitting mascot for Rare Disease Day

Why Zebras?
A fitting mascot for #RareDiseaseDay

“When you hear hoofbeats, think horses, not zebras.”
That doesn't work for us. There's a lot we can learn, and a lot of work to do.
🦓🦋
buttahflyk.substack.com/p/why-zebras
@rarediseaseday.bsky.social #sarcoidosis #ShowYourStripes #ZebraStrong

FLaB background with screenshot of Sarcosine News column titled "The Best advice I ever got for dealing with a rare disease"

On All-Star Weekend, I was reminded of the best advice I ever got for dealing with a #RareDisease. In this week's #SarcoidosisNews column, I share what I learned, how it's served me well, and how it can work for you.
🦋
#ChronicIllness #sarcoidosis #SpoonieSky
sarcoidosisnews.com/columns/best...

🦓 Rare Disease Day: Rare Diseases Don’t Exist in Isolation

Individually rare. Collectively affecting millions.

Follow along as we spotlight how rare disease connects to key healthcare awareness areas recognized this month.

www.rarediseaseadvisor.com

#RareDiseaseDay #RareDisease

“It’s Rare Disease Day!” with the Rare Disease Day hand logo and the website” The background is a blue and purple gradient.

🌍 It’s #RareDiseaseDay 2026! 💜

Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

👉 Read more: https://go.rarediseaseday.org/NEWS

FLaB background with NORD/RDD zebra graphic. Text reads Today is Rare Disease Day Show your stripes for the 1 in 10 Americans with a rare disease

FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? Any disease affecting fewer than 200,000 people in the U.S. is considered rare.

FLaB background with NORD/RDD Zebra graphics. Text reads Why Zebras? Doctors are often taught "When you hear hoofbeats, think horses, not zebras. The idea is that we should look for the simplest explanation for things. But for people with rare diseases, that simple explanation doesn't cut it. We need our doctors to think beyond horses, beyond common conditions, to the rare diseases like sarcoidosis that affect fewer than 200,000 people in the US, or roughly 1.2 million worldwide. Since they're so rare, most people don't know about them. Medical students don't learn much about them. Researchers don't study them. That all leads to longer times to diagnosis, fewer treatments, and poorer outcomes. That all needs to change. That's why it's so important for us to join together, raise our voices, and raise awareness.

FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? Rare diseases affect an estimated 350 million individuals worldwide.

It's #RareDiseaseDay!
DID YOU KNOW ... ?
🦓 Any disease affecting fewer than 200,000 people in the U.S. is considered #rare.
🦓 The zebra has become the mascot for #RareDisease
🦓 #RareDiseases affect an estimated 350 million individuals worldwide.
🦋
#ShowYourStripes #ZebraStrong

Just saying, but when people are trying to do everything they can to prevent you from voting, that’s when you absolutely need to vote.

Ready to make this the biggest midterm turnout in history?

Screenshot of Ticketmaster account graphic with NY Sirens logo; text reads "You Got the Tickets New York Sirens vs Ottawa Charge"

Just got tickets for my first
@thepwhl.com @newyorksirens.com game (vs @pwhlcharge.bsky.social) ... now all I've gotta do is learn the rules ... and the positions ... and the roster!
🦋
#EveryoneWatchesWomensSports #NYSirens🗽 #PWHS🏒 #WomensHockey

Free virtual conference aims to empower sarcoidosis community The Sarcoidosis Research Institute is hosting a free virtual conference on April 25 aimed at empowering members of the sarcoidosis community.

Just what we need! Read on to hear from a few of the speakers about what we're bringing to the "Empowering the Patient Journey: Living Well with Sarcoidosis" table ... and then register for the free virtual event!
~🦋
sarcoidosisnews.com/news/free-vi...
#PatientEducation #sarcoidosis #SarcStrong

Me, too.

Bitmoji of me holding a big box labeled "all my love and support"

Sending hugs and hope, my friend 🫂🌻🦋