Lipodystrophy United graphic titled “2025 Annual Report” with a collage of community photos (families, small groups, and event moments). A red banner at the bottom reads, “Now available on our website!”

Our 2025 Annual Report is here! 🎉 Take a look at the impact you made possible, community moments, progress, and what’s next for Lipodystrophy United. Now available on our website.

#lipodystrophyunited #lipodystrophy #WLD #raredisease

Cover slide that reads “NEW RESOURCE! Lipodystrophy Mental Health Series — SLIDE TO SEE HIGHLIGHTS,” with Lipodystrophy United branding and the Give an Hour logo. Background is a faded collage of event photos.

Slide titled “The SEVEN Types of Rest” describing Physical Rest, Mental Rest, and Sensory Rest with small icons beside each section. Give an Hour logo appears in the lower right.

Slide describing Emotional Rest, Social Rest, Creative Rest, and Spiritual Rest with small icons beside each section. Give an Hour logo appears in the lower right.

Slide titled “Self-Compassion Strategies” with a light blue box listing tips such as stress reduction, nourishing food, rest, movement, taking time off without guilt, enjoyable activities, seeking help/counseling, mindfulness, obtainable goals, and self-kindness. Give an Hour logo is in the lower right.

New resource 📘💚 Introducing our Lipodystrophy Mental Health Series, created with Give an Hour. Swipe through for highlights and practical tools you can use right now. Find it on our website!

#lipodystrophyunited #lipodystrophy #WLD #raredisease

Promotional graphic from Lipodystrophy United showing a smiling woman seated in a chair indoors next to a potted tree. Text reads: “WATCH NOW. Find Gretchen’s Story on our WLD 2026 Symposium recording. Now available on our website!”

Watch now: Gretchen’s story is featured in our World Lipodystrophy Day 2026 Symposium recording, now available on our YouTube. ❤️🎥

Watch here: youtu.be/jVmUexQICl0

#lipodystrophyunited #lipodystrophy #WLD #raredisease

Here’s a warm message from Kate Stratton for WLD!

#lipodystrophyunited #lipodystrophy #WLD #raredisease

Poster with a gray world map background that reads “World Lipodystrophy Day” and “March 31st, 2026.” Logos of multiple lipodystrophy patient organizations appear across the top and bottom, including AELIP, Lipodystrophy United–Israel, Lipodystrophy Canada, AiLIP, AFLIP, ACOPEL, Lipodystrophy Germany, Lipodystrophy UK, and Lipodystrophy United.

TODAY is World Lipodystrophy Day 2026! 🌍We’re proud to stand with patient organizations around the world to raise awareness, reduce isolation, and amplify the voices of people living with lipodystrophy. Stay tuned for more!
#lipodystrophyunited #lipodystrophy #WLD #raredisease

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

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

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

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

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

A Giving Tuesday promotional graphic for Lipodystrophy United. At the top left is the Lipodystrophy United logo, and at the top right is the Giving Tuesday heart logo. Large text reads: “Be a Beacon of LIGHT.” Below it are several photos of Lipodystrophy United community members — a large group standing by the water during Community Day, a group sitting together indoors wearing LU hats, and smaller family photos of individual community members. Bold red text at the bottom says, “DONATE! This Giving Tuesday.” Below that, smaller text reads: “Follow us to hear more about how to donate.”

Be a beacon of light for our community! Follow in our Giving Tuesday journey to raise money towards community travel stipends for our EL-PFDD FDA meeting. Donate and learn more at lipodystrophyunited.org/el-pfdd. Light the way to future advancements!
#lipodystrophyunited #GivingTuesday

🎥 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

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”

A flyer for Lipodystrophy United’s Boston Community Day event. The top shows a large photo of smiling attendees from a previous event wearing white hats. The text reads: “Don’t Miss Out. Boston Community Day, October 25th–26th. The Royal Sonesta, Cambridge. 11 AM Saturday, October 25th. Register Now! Link in the Caption.” The flyer includes two smaller photos — one of the Boston Public Garden with people boating on the water, and another showing a group attending a lecture or presentation. The Lipodystrophy United logo appears at the bottom along with the website link: https://lipodystrophyunited.org.

There’s still time to join us in Boston for Community Day!
📅 October 25–26 at The Royal Sonesta, Cambridge
Come connect, learn, and celebrate with the lipodystrophy community.
Register now at forms.gle/WLZ17za8DWKy...
#lipodystrophy #lipodystrophyunited #boston

A flyer from Lipodystrophy United promoting a Lunch and Learn event. The title at the top reads: “Lunch and Learn with Dr. Oral.” The topic is “Tirzepatide for Lipodystrophy and Other Available Studies.” Event details: “Saturday, October 18th, 2025, 12 PM CST. Register with the link in the caption.” On the right is a photo of Dr. Oral wearing a green blazer and smiling. At the bottom are contact details: info@lipodystrophyunited.org and https://lipodystrophyunited.org.

Join us for our next Lunch and Learn with Dr. Oral on Saturday, October 18th, at 12 PM CST!
Topic: Tirzepatide for Lipodystrophy and Other Available Studies 🧪
Don’t miss this chance to learn, ask questions, and connect with the community.
LINK: us06web.zoom.us/meeting/regi...
#lipodystrophyunited

A flyer from Lipodystrophy United promoting the return of Tea with LU. The background features a sketch of a teacup and saucer. The main text reads: “This coming Tea with LU – Community Led Open Session. Join us October 7th at 6 PM CST. After a short break, Tea with LU is back! RSVP with the link in the caption.” The bottom includes the Lipodystrophy United logo, website (lipodystrophyunited.org)

☕ Tea with LU is back! 🎉
Join us for a community-led open session on Tuesday, October 7th at 6 PM CST. This is your space to connect, share, and support one another.
RSVP: lipodystrophyunited.org/schedule-of-...
#lipodystrophy #lipodystrophyunited

💡 Lipid lesson: Cholesterol vs Triglycerides 🧬
Both are fats in your body, but they’re not the same.
👉 Cholesterol = helps build cells & hormones.
👉 Triglycerides = store energy from food.
#Lipodystrophy #LipodystrophyUnited #RareDisease #Triglycerides #Cholesterol

A welcome graphic from Lipodystrophy United with a red and white design. At the top, bold text reads “Welcome to Our Team!” In the center is a circular photo of Katelyn Pitt, who has long dark curly hair and is smiling while sitting in a car. Below, text introduces her as “Katelyn Pitt, Social Media Intern.” The message says, “We are excited to have Katelyn on our team! We are confident that she will be a valuable asset to our brand and we look forward to seeing what she accomplishes in her new role.” At the bottom are the Lipodystrophy United email and website links.

Welcome Katelyn to our social media team! 🎉 She’s a senior at UCF studying communications, with rare disease close to her heart. We’re so excited to have her join us in amplifying voices and sharing stories from the lipodystrophy community!
#lipodystrophy #lipodystrophyunited

Flyer for Lipodystrophy United’s “Tea with LU – Back to School Edition.” The top features a teacup illustration with the text “Tomorrow’s Tea with LU.” A paper airplane and a bingo card graphic are included as playful elements. The main red box reads: “Back to School Edition! Join us tomorrow, September 2nd, at 6 PM CST. Bring a photo of yourself from school and play some fun back-to-school lipodystrophy-themed games!” At the bottom are the Lipodystrophy United logo and the website link: https://lipodystrophyunited.org.

Tomorrow’s Tea with LU is Back-to-school themed! 📚🎒 Bring a school photo of yourself to share, we’ll swap stories, play fun games, and connect as a community. RSVP and join us!
lipodystrophyunited.org/schedule-of-...
#LipodystrophyUnited #Lipodystrophy

Digital flyer for “Tea with LU” by Lipodystrophy United. The background is light beige with a red illustrated teacup and saucer at the top. Large black and script text reads, “This coming Tea with LU.” Below are three red rounded rectangles with white text: “An Open Conversation for Our Community” “Tuesday, September 2, 2025, 6 – 7 PM CST” with a small white clock icon. “Email info@lipodystrophyunited.org with any questions” with a white envelope icon. The bottom left shows the Lipodystrophy United logo, featuring three red and black abstract shapes and the text “Lipodystrophy United.” The bottom right displays the website URL https://lipodystrophyunited.org, accompanied by a globe icon. Light red line drawings of a tea bag and other tea elements appear in the background.

Join us for Tea with LU on Tuesday, September 2nd, from 6–7 PM CST! ☕
We’re hosting an open conversation—come share, listen, and connect with others in the lipodystrophy community.
Register here: lipodystrophyunited.org/schedule-of-...
#Lipodystrophy #LipodystrophyUnited

Graphic for Lipodystrophy United featuring “EveryLife Foundation for Rare Disease: Rare Across America.” It announces that Kate shared her experience speaking with Congress, with topics including the Give Kids a Chance Act (reinstating the Rare Pediatric Disease Priority Review Voucher program), the Accelerating Kids’ Access to Care Act (streamlining Medicaid access to out-of-state specialists), and supporting newborn screening and biomedical research funding (NIH, FDA, CDC). The design includes Lipodystrophy United’s logo, a smiling woman with glasses, and contact information at the bottom: info@lipodystrophyunited.org and https://lipodystrophyunited.org.

We’re proud to have represented the lipodystrophy community during Rare Across America! Kate shared our voices on key policies and illustrated the importance of patient advocacy.
#Lipodystrophy #LipodystrophyUnited

Meet Athena!
Athena and her mom are on a mission to spread awareness about lipodystrophy, and they know that sharing her story helps make that possible. They inspire us all, and we’re so grateful to have them as part of our community.
#LipodystrophyUnited #Lipodystrophy

A promotional graphic for "Tea with LU" hosted by Lipodystrophy United. At the top, there is a red sketch-style illustration of a teacup and saucer. Bold text reads, "Tomorrow's Tea with LU." Below is a red rounded rectangle with white text: "It's not too late! Don't forget to join us tomorrow, August 21st, at 6 PM CST, for a special patient advocacy session" At the bottom, the Lipodystrophy United logo appears with the website link: https://lipodystrophyunited.org. A tea bag illustration is faintly visible in the background.

It's not too late! Join us tomorrow and learn to be a patient advocate! ☕
Register here: lipodystrophyunited.org/schedule-of-...
#Lipodystrophy #LipodystrophyUnited