Chronic pancreatitis you want to make sure you don’t eat too much fiber. The enzymes we take with food at every meal causes issues with fiber. #chronicpancreatitis #raredisease

chronic pancreatitis W/EPI make sure eat low fat foods. I eat lean chicken 4 dinner. Veggies your choice. My lunch a tuna sandwich with some veggies. I eat for breakfast some oatmeal or dry cereal because cereal has a lot of nutrients. For snacks in between meals saltine crackers or ritz w/ cheese

My chronic pancreatitis with EPI has been so bad this year and now I know why. I got the mri results back. #raredisease #chronicpancreatitis #chronicpain this is what we go through living with a rare disease. #livingwithraredisease

I just had a MRCP and I just got the results back. It’s not good. I’m so frustrated and angry.

Prospective multicenter study of patients with intractably painful #ChronicPancreatitis or RAP found total pancreatectomy with islet autotransplantation significantly reduced pain burden and improved quality of live. 🔗 ow.ly/FW0T50XA8jE

Why #ChronicPancreatitis? It's a painful, often misunderstood disease with no approved treatments. Many patients struggle to get clear answers. That's why we're dedicated to providing education and advocacy, so patients can make informed decisions about their health.

#GLP1drugs #pancreatitis #MHRA #GLP1receptoragonists #weightloss #type2diabetes #GLP1sideeffects #MHRA #GenomicsEngland #NovoNordisk #Ozempic #Wegovy #semaglutide #EliLilly #Mounjaro #tirzepatide #chronicpancreatitis #YellowCardBiobankproject pharmaphorum.com/news/uk-prob...

Share this post far and wide, and together, we will get to grips with guts! 💚 If you need to access this content in a different format, we'd be happy to provide it. Please DM us. #Pancreatitis #AcutePancreatitis #ChronicPancreatitis #Pancreas (🧵6/6)

In time with the @ueg guidelines, our review on #chronicpancreatitis was published in @TheLancet authors.elsevier.com/c/1kDP6V-4XO... Thanks to #robertcverdonk #hjalmarsandvoort #naomithierens and #jeaninvanhooft

#ChronicPancreatitis (CP) is a syndrome commonly associated with clinical features of abdominal pain, exocrine and endocrine insufficiency, secondary pancreatic cancer, and other complications. 🔗 Access the online course on Gutflix: https://bit.ly/3VmddW5#ChronicPancreatitis

Lets talk Genetics: A lot of folks w Autism dont like Genetics Research— they think it will be used for eugenics. While there are awful people that will misuse genealogy, genealogy helps w timely diagnosis and appropriate treatments, like occupational and physical therapies tailored to the patient.

🧬 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

💜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

🌍 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

🎗️ 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

🌍 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

🎙️ 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/

🌟 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

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

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.

👆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

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

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.

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...

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-...

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

US FDA declines to approve Disc Medicine's rare disease drug reut.rs/3OIs1xW

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

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

Learn about MG balance: https://bit.ly/4rp5Gnw #MyastheniaGravis #MyastheniaGravisNews #LivingWithMG #ChronicIllnessJourney #DisabilityLife #Bionews

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...

I purchased this cookbook. It is great! pancreasfoundation.org/patient-reso...

I am sick of being so exhausted all time.

So far this year the only change I've noticed is my fatigue is progressively worse. Ughhh.

Clinical trials for anyone interested mission-cure.org/clinical-tri...

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.