Honored to present our lab's research on Familial Partial Lipodystrophy at the 2026 WashU Pediatric Research Retreat! 🔬 iPSC-derived adipocytes + human adipose snRNA-Seq = new insights into a rare & complex disease. #Lipodystrophy #RareDisease #StoneLab #PedsResearch
Lipodystrophy United graphic titled “World Lipodystrophy Day — Everything You Need to Know About the History of WLD,” with a watercolor globe and logos of global lipodystrophy organizations along the bottom.
Learn about the history of World Lipodystrophy Day (March 31) and why the global community comes together each year on Instagram/Facebook. And don’t forget to join the “L” Campaign, share your “L” to show unity and support. 💚🌍#WLD2026 #TreatmentEquity #Lipodystrophy
Rare Disease Day graphic with a teal-to-purple gradient background and Lipodystrophy United logo. Text reads: “28 Feb 2026. EQUITY means fair access to diagnosis, treatment, care, and opportunities.” It also states: “5% of the world population is affected by rare diseases, that’s 400 million people.” Includes “rarediseaseday.org” and “#RareDiseaseDay.”
Today is #RareDiseaseDay! Rare is not as rare as you might think, and that’s why equity matters: fair access to diagnosis, treatment, care, and opportunities for everyone. Share an image of you and your community in honor of #RDD
#lipodystrophy #lipodystrophyunited
Four women stand side-by-side indoors in front of a woven wall hanging, smiling at the camera. A Lipodystrophy United logo banner appears at the top left. A large silver badge overlay reads “Mental Health Rare Impact Partner” with a zebra graphic and Give an Hour branding.
We are honored to be recognized as an Impact Partner by Give An Hour this RDD, which reflects our partnership in engagement in trauma-informed mental health education, programming, and capacity-building initiatives. We can’t wait for Feb 28th!
#RDD #RareDiseaseDay #LipodystrophyUntied #Lipodystrophy
Rare… but never alone.
Grateful for a community that reminds me connection is everything.
@LipodystrophyUnited #RareDiseaseDay #lipodystrophy
Living with a rare disease taught me how to fight for my wins. Follow along — let’s get you some too.
Remember:
A closed mouth doesn’t get fed… so let’s eat. #lipodystrophy
Lipodystrophy United graphic with a photo collage of community members and the headline “Rare Disease Day Campaign: Share Your Story.” Text invites people to join on February 28th, fill out a form to share their story to be highlighted on Rare Disease Day, and notes options to answer guided questions or meet via Zoom to build a narrative. Contact email listed: info@lipodystrophyunited.org.
Rare Disease Day is February 28th, and we want to highlight your voice. 🦓
Share your lipodystrophy story for our Rare Disease Day campaign by filling out this short form: forms.gle/FnWjSoqjozq6...
#lipodystrophy #lipodystrophyunited #rarediseaseday #RDD
High LDL (cholesterol) can be a big issue in lipodystrophy — but there are multiple paths to lowering it.
• Lifestyle foundations
• Statins (and why tolerance varies)
• Non-statin options like ezetimibe, PCSK9 inhibitors, and bempedoic acid
#Lipodystrophy #RareDisease #Cholesterol #LDL
When you’re red-faced, out of breath, and sitting in a room full of strangers… Instead of panicking, you smile a little.
That’s growth.
I have had to learned how to walk the last part of the journey with myself and I’m okay there. #lipodystrophy #advocacy #nursingstu
Same condition. Same prescription.
Very different price.
$210 for a Dexcom isn’t a want—it’s how I manage my disease. #lipodystrophy #advocacy #type2diabetes
Closing out 2025 in awe. I am still confirming details, but hopeful to attend Rare Disease Week on Capitol Hill with the EveryLife Foundation to sharing my story, advocating in DC, and representing my state. Grateful, humbled, and ready. #lipodystrophy #EverLifeFoundation#MichiganRare
The Lipodystrophy United team hopes you had the best holiday season! Dr. Fourman, one of our newest SAB members, would like to share a few words and remind us of our mission here at LU. Join us in welcoming her!
#lipodystrophy #lipodystrophyunited
Our team is incredibly grateful for each and every donation. Your support will directly shape the impact of our EL-PFDD meeting, and we can’t wait to see what we accomplish together. Thank you and happy holidays from all of us at Lipodystrophy United.
#lipodystrophy #lipodystrophyunited
Graphic from Lipodystrophy United featuring a quote on a light blue sky background. The quote reads: “I’ve learned practical strategies and coping tools that have truly helped me grow, both as a mom and as a person. I’m deeply grateful for the guidance they provide.” The quote is attributed to Lori Seida, an advocate and caregiver, describing her experience with Give an Hour seminars. The Lipodystrophy United logo appears in the top left corner.
Lori Seida shares how participating in Give an Hour seminars supported her growth, both as a parent and a person. Find her full statement in our upcoming newsletter! We’re grateful to partner in creating spaces where caregivers feel supported, empowered, and never alone.
#lipodystrophy
Refill day hits different.
This is what rare disease treatment looks like. #lipodystrophy
Metabolic dysfunction-associated steatotic liver disease: heterogeneous pathomechanisms and effectiveness of metabolism-based treatment
www.thelancet.com/journals/lan...
#MASLD #obesity #lipodystrophy
#OpenAccess
#MedSky #EndoSky #LiverSky
Photo of Serj, a lipodystrophy patient and advocate, standing outdoors against a stone wall and greenery. He is wearing a denim vest and holding a cane. Text on the image reads: “As I’ve lived with this disease, I’ve learned: my suffering does not define who I am.” The Lipodystrophy United logo appears in the corner.
Stories like Serj’s are the reason we’re asking our community to continue towards our new goal of $50,000. Your $13 donation helps ensure every story is heard, every voice matters, and no one faces lipodystrophy alone.
giving-tuesday.lipodystrophyunited.org
#Lipodystrophy #LipodystrophyUnited
Promotional graphic from Lipodystrophy United announcing “$13 for 13 Years” on Saturday, December 13, 2025. The image shows people talking together at an indoor event on the left and a red text panel on the right explaining that donations support patient and caregiver travel, accessibility accommodations, guidance for researchers and drug developers, and defining priorities for trials and treatments. A “Donate Now” button appears at the bottom.
$13 for 13 Years
This December 13th, we’re celebrating 13 years of Lipodystrophy United by asking our community to donate $13 to help us reach our NEW $50,000 goal. Every dollar helps move our community forward together. giving-tuesday.lipodystrophyunited.org
#LipodystrophyUnited #Lipodystrophy
Did you know that lipodystrophy affects how the body processes fat and cholesteromaking LDL harder to manage?
Diet is one piece of the puzzle, but personalized medical care is essential#RareDiseaseAwareness #Lipodystrophy #LDL #MetabolicCare #Lipodystrophyunited
Two people stand smiling on either side of a large screen at a conference booth, pointing to a presentation titled “The Importance of the EL-PFDD Meeting” by Lipodystrophy United. The screen displays the organization’s website and contact email. Conference lighting and booths are visible in the background.
Our newest Lunch & Learn is officially live! 🎉
Learn more about the importance of the EL-PFDD meeting and how patient voices shape the future of research and treatment from Kate and Sharon. Watch now on our website under “Lectures”!
#lipodystrophyunited #lipodystrophy
Endocrine Grand Rounds: 1st year fellow Dr Maanasa Reddy discussed different types of #lipodystrophy and how to monitor and treat them.
@cudeptofmedicine.bsky.social
Did you know? When it comes to LDL (“bad cholesterol”), there is no one-size-fits-all number for people with lipodystrophy. Always work with a lipodystrophy-experienced clinician to find the LDL range that’s right for you. 💙 #Lipodystrophy #LDL #RareDisease #LipodystrophyUnited
🎥 Big news for the Lipodystrophy community!
We’re officially hosting our Externally-Led PFDD Meeting with the FDA on September 11th near Washington, D.C. 🇺🇸
#lipodystrophy #lipodystrophyunited #FDA
Meet Miranda and Sydney Billington, an inspiring mother and daughter duo taking on FPLD2 together 💪❤️
Have a story to share? We’d love to feature you! Send your story and photo to info@lipodystrophyunited.org and help us continue showing the power of connection
#lipodystrophyunited #lipodystrophy
A digital flyer from Lipodystrophy United featuring an image of a laptop displaying a photo of Dr. Elif Oral and the text “W/ Dr. Elif Oral — Familial Partial Lipodystrophy & Tirzepatide: Clinical Trial Update.” The banner reads “New Lunch and Learn Available!” and a red button at the bottom says “Now on Our Website.” The Lipodystrophy United logo and contact information (info@lipodystrophyunited.org, lipodystrophyunited.org) appear at the bottom.
If you missed out, don’t worry!
We’re excited to share our latest session with Dr. Elif Oral:
“Familial Partial Lipodystrophy & Tirzepatide: Clinical Trial Update.”
🎥 Watch now on our website: lipodystrophyunited.org/lectures
#LipodystrophyUnited #Lipodystrophy
A recurrent #ACAA2 variant causes a #dominant syndrome of #lipodystrophy, #lipomatosis, infantile #steatohepatitis and
#hypoglycemia
Per @rjdlab.bsky.social, "very few inborn errors of metabolism are inherited in a dominant fashion. These are zebras among zebras"!
Thank you to everyone who made Community Day a fantastic success! Tears were shed, friendships were made, and hope filled the room; we are stronger together! Here are some awesome clips from the day
#lipodystrophy #lipodystrophyunited
“High LDL can be part of life with lipodystrophy — but knowledge is power 💪 #Lipodystrophy #RareDisease #Cholesterol #HeartHealth #LDL #LipodystrophyUnited”
Maybe they'd leave me alone if I got #lipodystrophy face?
🤔 Just like I thought Trump would leave the immigrants alone if I left the country, right.
HIV NRTI drugs that cause lipodystrophy
NRTI drugs that cause lipodystrophy
⚠️ #OZEMPIC & #LIPODYSTROPHY ⚠️
Wonder if a greedy #pharmaceutical company modified the recipe for those early #HIV drugs & made it into #Ozempic 🤔
I'm thinking maybe that's what happened to #PeterThiel #face. He used to be cute. Although their #mindcontrol still makes me think that 🤷♂️
