Briana
@scarredpancreascp.bsky.social
Living with pancreatic atrophy and chronic pancreatitis with EPI. Documenting the journey, sharing resources, and fighting for awareness. #ChronicPancreatitis #PancreasHealth #Raredisease sepsis survivor, chronic pancreatitis warrior, neurodivergent.
Reposted by Briana
🧬 Each rare disease has its own set of challenges, symptoms, and experiences. For many, there are few or no treatment options.
💜Equity means ensuring everyone has the same chance to participate in and benefit from research.
Learn More: https://go.rarediseaseday.org/equity
#RareDiseaseDay
💜Equity means ensuring everyone has the same chance to participate in and benefit from research.
Learn More: https://go.rarediseaseday.org/equity
#RareDiseaseDay
December 16, 2025 at 1:00 PM
🧬 Each rare disease has its own set of challenges, symptoms, and experiences. For many, there are few or no treatment options.
💜Equity means ensuring everyone has the same chance to participate in and benefit from research.
Learn More: https://go.rarediseaseday.org/equity
#RareDiseaseDay
💜Equity means ensuring everyone has the same chance to participate in and benefit from research.
Learn More: https://go.rarediseaseday.org/equity
#RareDiseaseDay
Reposted by Briana
💜Living with a rare disease can impact every corner of a person’s life.
This month we’re raising awareness of mental health in the rare disease community, recognising the importance of open conversations.
Learn more here:https://go.eurordis.org/mentalhealth
#RareDiseaseDay #MentalHealth
This month we’re raising awareness of mental health in the rare disease community, recognising the importance of open conversations.
Learn more here:https://go.eurordis.org/mentalhealth
#RareDiseaseDay #MentalHealth
December 30, 2025 at 1:00 PM
💜Living with a rare disease can impact every corner of a person’s life.
This month we’re raising awareness of mental health in the rare disease community, recognising the importance of open conversations.
Learn more here:https://go.eurordis.org/mentalhealth
#RareDiseaseDay #MentalHealth
This month we’re raising awareness of mental health in the rare disease community, recognising the importance of open conversations.
Learn more here:https://go.eurordis.org/mentalhealth
#RareDiseaseDay #MentalHealth
Reposted by Briana
🌍 While 300 million people worldwide live with a rare disease, funding is limited.
💜 Equity for rare diseases means investing more where it’s needed most.
Learn more about equity: https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
💜 Equity for rare diseases means investing more where it’s needed most.
Learn more about equity: https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
February 2, 2026 at 1:00 PM
🌍 While 300 million people worldwide live with a rare disease, funding is limited.
💜 Equity for rare diseases means investing more where it’s needed most.
Learn more about equity: https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
💜 Equity for rare diseases means investing more where it’s needed most.
Learn more about equity: https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
Reposted by Briana
🎗️ Rare cancers often receive less attention, leaving patients and families with fewer options and more uncertainty. Equal funding isn’t enough.
💜 Equity for rare diseases means fair funding, equal care & real hope for all.
#RareDiseaseDay #EquityForRare #RareCancers #WorldCancerDay
💜 Equity for rare diseases means fair funding, equal care & real hope for all.
#RareDiseaseDay #EquityForRare #RareCancers #WorldCancerDay
February 4, 2026 at 8:00 AM
🎗️ Rare cancers often receive less attention, leaving patients and families with fewer options and more uncertainty. Equal funding isn’t enough.
💜 Equity for rare diseases means fair funding, equal care & real hope for all.
#RareDiseaseDay #EquityForRare #RareCancers #WorldCancerDay
💜 Equity for rare diseases means fair funding, equal care & real hope for all.
#RareDiseaseDay #EquityForRare #RareCancers #WorldCancerDay
Reposted by Briana
🌍 Rare diseases affect over 300 million people, yet access to diagnosis & treatment still depends on where you live.
💜 Equity for rare diseases means is access to suitable care, regardless of where you live.
Learn more 👉 https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
💜 Equity for rare diseases means is access to suitable care, regardless of where you live.
Learn more 👉 https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
February 9, 2026 at 1:00 PM
🌍 Rare diseases affect over 300 million people, yet access to diagnosis & treatment still depends on where you live.
💜 Equity for rare diseases means is access to suitable care, regardless of where you live.
Learn more 👉 https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
💜 Equity for rare diseases means is access to suitable care, regardless of where you live.
Learn more 👉 https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
Reposted by Briana
🎙️ In our seventh episode of Rare on Air Stories, we meet Loago from Botswana, who lives with Gaucher disease.
Diagnosed as a teenager, his story is one of resilience, loss, and hope in the face of unequal access to care.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
Diagnosed as a teenager, his story is one of resilience, loss, and hope in the face of unequal access to care.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
February 12, 2026 at 1:00 PM
🎙️ In our seventh episode of Rare on Air Stories, we meet Loago from Botswana, who lives with Gaucher disease.
Diagnosed as a teenager, his story is one of resilience, loss, and hope in the face of unequal access to care.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
Diagnosed as a teenager, his story is one of resilience, loss, and hope in the face of unequal access to care.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
Reposted by Briana
🌟 Meet Mak.
Equity for her means more opportunities to thrive in your community, beyond the discrimination you face.
👉 Provide opportunities in YOUR community this #RareDiseaseDay by planning an event: https://go.rarediseaseday.org/event
Equity for her means more opportunities to thrive in your community, beyond the discrimination you face.
👉 Provide opportunities in YOUR community this #RareDiseaseDay by planning an event: https://go.rarediseaseday.org/event
February 13, 2026 at 1:00 PM
🌟 Meet Mak.
Equity for her means more opportunities to thrive in your community, beyond the discrimination you face.
👉 Provide opportunities in YOUR community this #RareDiseaseDay by planning an event: https://go.rarediseaseday.org/event
Equity for her means more opportunities to thrive in your community, beyond the discrimination you face.
👉 Provide opportunities in YOUR community this #RareDiseaseDay by planning an event: https://go.rarediseaseday.org/event
Reposted by Briana
LAST DAY TO REGISTER!
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
February 6, 2026 at 5:05 PM
LAST DAY TO REGISTER!
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
Reposted by Briana
For Rare Disease Week, we’re reminding the world that even when our journeys look “rare,” we are anything but invisible.
Because every “piece” in this box — every story, every body, every rare condition — matters.
Because every “piece” in this box — every story, every body, every rare condition — matters.
February 9, 2026 at 3:04 PM
For Rare Disease Week, we’re reminding the world that even when our journeys look “rare,” we are anything but invisible.
Because every “piece” in this box — every story, every body, every rare condition — matters.
Because every “piece” in this box — every story, every body, every rare condition — matters.
Reposted by Briana
👆PLEASE READ ABOVE🙏
Most of you know I have a #RareDisease…I thank you for your tolerance & kindness as my health does not always allow me to be here daily…
Right now, I’m fighting an infection, but know #YouMatter!
I love & miss you,
Aspen (BBS) 🦓
#RareDiseaseAwareness
👇
youtu.be/QDp2jWAAHF8
Most of you know I have a #RareDisease…I thank you for your tolerance & kindness as my health does not always allow me to be here daily…
Right now, I’m fighting an infection, but know #YouMatter!
I love & miss you,
Aspen (BBS) 🦓
#RareDiseaseAwareness
👇
youtu.be/QDp2jWAAHF8
February 13, 2026 at 9:25 AM
👆PLEASE READ ABOVE🙏
Most of you know I have a #RareDisease…I thank you for your tolerance & kindness as my health does not always allow me to be here daily…
Right now, I’m fighting an infection, but know #YouMatter!
I love & miss you,
Aspen (BBS) 🦓
#RareDiseaseAwareness
👇
youtu.be/QDp2jWAAHF8
Most of you know I have a #RareDisease…I thank you for your tolerance & kindness as my health does not always allow me to be here daily…
Right now, I’m fighting an infection, but know #YouMatter!
I love & miss you,
Aspen (BBS) 🦓
#RareDiseaseAwareness
👇
youtu.be/QDp2jWAAHF8
Reposted by Briana
Rare disease is more than statistics. It is lived every day by families searching for answers.
For Rare Disease Month, we share global, People-First stories showing how earlier genomics and long-read WGS can shorten diagnostic journeys.
Details: bit.ly/3ZyEczS
#WeCareForRare #PacBio #RareDisease
For Rare Disease Month, we share global, People-First stories showing how earlier genomics and long-read WGS can shorten diagnostic journeys.
Details: bit.ly/3ZyEczS
#WeCareForRare #PacBio #RareDisease
Rare Disease Month: Taking a People-First approach in the global fight against rare disease - PacBio
For Rare Disease Month, we’re sharing stories across the globe that connect the data to the lives of the families at the center of it.
bit.ly
February 12, 2026 at 10:38 PM
Rare disease is more than statistics. It is lived every day by families searching for answers.
For Rare Disease Month, we share global, People-First stories showing how earlier genomics and long-read WGS can shorten diagnostic journeys.
Details: bit.ly/3ZyEczS
#WeCareForRare #PacBio #RareDisease
For Rare Disease Month, we share global, People-First stories showing how earlier genomics and long-read WGS can shorten diagnostic journeys.
Details: bit.ly/3ZyEczS
#WeCareForRare #PacBio #RareDisease
Reposted by Briana
This was also reported at the NIH hospital this year. The number of patients now being treated at NIH, at the nation’s rare-disease research hospital, a source of hope for many, is way down.
One can see patterns here, and it’s terrible.
One can see patterns here, and it’s terrible.
Just discovered yet another severe harm ICE is causing: huge cutbacks at our hospitals, because patients won't come in, because ICE hangs out inside the building or by the doors and abducts people. Crushing our medical system alongside our schools and our businesses.
February 12, 2026 at 3:19 AM
This was also reported at the NIH hospital this year. The number of patients now being treated at NIH, at the nation’s rare-disease research hospital, a source of hope for many, is way down.
One can see patterns here, and it’s terrible.
One can see patterns here, and it’s terrible.
Reposted by Briana
Julius "Juice" Collins is a legend in the Minneapolis music scene, and he's dealing with a rare autoimmune disease.
I love his work with Greazy Meal, Sons of Almighty and other bands. Please give what you can spare! <3
www.gofundme.com/f/juice-we-g...
I love his work with Greazy Meal, Sons of Almighty and other bands. Please give what you can spare! <3
www.gofundme.com/f/juice-we-g...
Donate to Juice, We got Your Back, organized by Brian Ziemniak
To All Minneapolis Music Fans & Friends,
As many of you know, local vocal legend Julius Col… Brian Ziemniak needs your support for Juice, We got Your Back
www.gofundme.com
February 14, 2026 at 12:16 AM
Julius "Juice" Collins is a legend in the Minneapolis music scene, and he's dealing with a rare autoimmune disease.
I love his work with Greazy Meal, Sons of Almighty and other bands. Please give what you can spare! <3
www.gofundme.com/f/juice-we-g...
I love his work with Greazy Meal, Sons of Almighty and other bands. Please give what you can spare! <3
www.gofundme.com/f/juice-we-g...
Reposted by Briana
Reposted by Briana
EXCLUSIVE: Eddie Vedder tells Rolling Stone about his family's charity work for kids with the rare genetic disease, EB.
"We've celebrated the progress, but the cure is what we're after. This is, scientifically, a solvable problem."
www.rollingstone.com/music/music-...
"We've celebrated the progress, but the cure is what we're after. This is, scientifically, a solvable problem."
www.rollingstone.com/music/music-...
Eddie Vedder Changed Kids' Lives With Pearl Jam. Now, He and His Wife, Jill, Are Trying to Save Them
Eddie breaks down a powerful new documentary, 'Matter of Time,' which combines solo concert footage with the story of his family's charity work.
www.rollingstone.com
February 11, 2026 at 1:02 PM
EXCLUSIVE: Eddie Vedder tells Rolling Stone about his family's charity work for kids with the rare genetic disease, EB.
"We've celebrated the progress, but the cure is what we're after. This is, scientifically, a solvable problem."
www.rollingstone.com/music/music-...
"We've celebrated the progress, but the cure is what we're after. This is, scientifically, a solvable problem."
www.rollingstone.com/music/music-...
Reposted by Briana
A few days ago my friend lost his young daughter to a rare genetic condition. Because it’s uncommon capitalist research institutions don’t dedicate money or time to studying it even though a cure is possible
Please help honor her memory by voting for Batten Disease research to receive grant funding
Please help honor her memory by voting for Batten Disease research to receive grant funding
One amazing way to keep Amelia’s fight against Batten Disease going is to vote for the BDSRA in the Project for Awesome 2026. Voting ends on Wednesday, Feb. 18.
Just head to: projectforawesome.com/videos/proje...
Just head to: projectforawesome.com/videos/proje...
February 13, 2026 at 10:11 PM
A few days ago my friend lost his young daughter to a rare genetic condition. Because it’s uncommon capitalist research institutions don’t dedicate money or time to studying it even though a cure is possible
Please help honor her memory by voting for Batten Disease research to receive grant funding
Please help honor her memory by voting for Batten Disease research to receive grant funding
Reposted by Briana
Reposted by Briana
US FDA declines to approve Disc Medicine's rare disease drug reut.rs/3OIs1xW
US FDA declines to approve Disc Medicine's rare disease drug
Disc Medicine said on Friday the U.S. Food and Drug Administration declined to approve its drug to treat a rare genetic disorder.
reut.rs
February 14, 2026 at 1:20 AM
US FDA declines to approve Disc Medicine's rare disease drug reut.rs/3OIs1xW
Reposted by Briana
Looking for a Gift for your little Zebra? We have you covered 😊
Pssst we recently shared this design as a free coloring page here on Bluesky 🩵🦓🩵
#childrensfashion #giftideas #EDS #raredisease #chronicillness #ehlersdanlossyndrome
Pssst we recently shared this design as a free coloring page here on Bluesky 🩵🦓🩵
#childrensfashion #giftideas #EDS #raredisease #chronicillness #ehlersdanlossyndrome
thezebraalliance - Zebra Alliance Kids
This is a product description
thezebraalliance.creator-spring.com
February 7, 2026 at 3:08 PM
Looking for a Gift for your little Zebra? We have you covered 😊
Pssst we recently shared this design as a free coloring page here on Bluesky 🩵🦓🩵
#childrensfashion #giftideas #EDS #raredisease #chronicillness #ehlersdanlossyndrome
Pssst we recently shared this design as a free coloring page here on Bluesky 🩵🦓🩵
#childrensfashion #giftideas #EDS #raredisease #chronicillness #ehlersdanlossyndrome
Reposted by Briana
How are you feeling?
🫠🥺😵💫😄🫣😎😖☺️
Need help finding mental health resources: We will help you find what you need 🩵
linktr.ee/thezebraalliance
#mentalhealth #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability ##ehlersdanlossyndrome
🫠🥺😵💫😄🫣😎😖☺️
Need help finding mental health resources: We will help you find what you need 🩵
linktr.ee/thezebraalliance
#mentalhealth #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability ##ehlersdanlossyndrome
February 7, 2026 at 9:31 PM
How are you feeling?
🫠🥺😵💫😄🫣😎😖☺️
Need help finding mental health resources: We will help you find what you need 🩵
linktr.ee/thezebraalliance
#mentalhealth #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability ##ehlersdanlossyndrome
🫠🥺😵💫😄🫣😎😖☺️
Need help finding mental health resources: We will help you find what you need 🩵
linktr.ee/thezebraalliance
#mentalhealth #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability ##ehlersdanlossyndrome
Reposted by Briana
Learn about MG balance: https://bit.ly/4rp5Gnw
#MyastheniaGravis #MyastheniaGravisNews #LivingWithMG #ChronicIllnessJourney #DisabilityLife #Bionews
#MyastheniaGravis #MyastheniaGravisNews #LivingWithMG #ChronicIllnessJourney #DisabilityLife #Bionews
February 13, 2026 at 10:45 PM
Reposted by Briana
Having chronic pancreatitis for me means a lot of hospital visits. It means pain. It’s means doctors not understanding because you have a rare disease. It’s frustrating and frightening and you’re overwhelmed.
January 14, 2026 at 4:28 AM
Having chronic pancreatitis for me means a lot of hospital visits. It means pain. It’s means doctors not understanding because you have a rare disease. It’s frustrating and frightening and you’re overwhelmed.
Read This: "Obama Breaks Silence on Trump’s Racist Ape Video" www.thedailybeast.com//obama-break...
Obama Breaks Silence on Trump’s Racist Ape Video
The former President highlighted protesters in Minneapolis who are fighting back.
www.thedailybeast.com
February 14, 2026 at 9:40 PM
Read This: "Obama Breaks Silence on Trump’s Racist Ape Video" www.thedailybeast.com//obama-break...
