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Lipodystrophy United
@lipodystrophyunite.bsky.social
14 followers 10 following 150 posts
The ONLY lipodystrophy patient foundation in the United States. We strive to increase understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Follow this account and visit our website to learn more!
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lipodystrophyunite.bsky.social
This holiday season, Briana reminds us of the importance of spending time with family and friends, and of truly living in the dash. We hope your holidays are filled with warmth and joy.
If you’re able, we invite you to continue supporting our work by donating at www.lipodystrophyunited.org.
A person stands outdoors against a bright sky, wearing a teal top and patterned wrap skirt, looking off into the distance. Overlaid text features a quote by Briana Steiner about living with lipodystrophy and focusing on the space between diagnosis and what comes next. Lipodystrophy United logo appears in the corner.
December 23, 2025 at 11:51 PM
lipodystrophyunite.bsky.social
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
December 19, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
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
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.
December 18, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
We’re excited to share our new Nutrition Guide for Lipodystrophy Syndromes, full guide available now at lipodystrophyunited.org/nutrition-1.
Created to help individuals and families navigate nutrition, offering practical, patient-centered information to support daily health and metabolic care.
December 15, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
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
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.
December 13, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
$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
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.
December 13, 2025 at 9:25 PM
lipodystrophyunite.bsky.social
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
December 11, 2025 at 6:00 AM
lipodystrophyunite.bsky.social
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
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.
December 9, 2025 at 1:17 AM
lipodystrophyunite.bsky.social
Giving Season begins with moments like this: connection, compassion, and the strength of our lipodystrophy community. ❤️
We’re just $5,000 away from unlocking our $10,000 match.
Giving Tuesday: December 2nd. Let’s reach this goal together!
DONATE HERE: giving-tuesday.lipodystrophyunited.org
A Giving Tuesday graphic featuring a close-up photo of two people embracing warmly at a community event. One person has their arms wrapped tightly around the other, and both appear emotional. The background shows a meeting room with chairs and water bottles on a table. In the top right corner is the Giving Tuesday heart logo. White bold text reads: “Today marks the start of Lipodystrophy United’s Giving Season.” At the bottom, additional text says: “Only $5,000 left to reach our generous $10,000 match! Giving Tuesday, Dec 2 2025.”
December 2, 2025 at 7:13 PM
lipodystrophyunite.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
November 27, 2025 at 5:45 AM
lipodystrophyunite.bsky.social
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
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.”
November 26, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
🎥 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
November 18, 2025 at 12:08 AM
lipodystrophyunite.bsky.social
☕ This Coming Tea with LU: Familial Lipodystrophy Session! 💬
We’re inviting everyone living with familial lipodystrophy to join us on Thursday, November 20th, from 6–7 PM CST for an open, supportive discussion.
👉 RSVP lipodystrophyunited.org/schedule-of-...
A cream and red graphic featuring a vintage teacup and saucer illustration. The text reads: “This coming Tea with LU. Calling all people with Familial Lipodystrophy. Thursday, November 20th, 2025, 6–7 PM CST. Link below.” The bottom includes the Lipodystrophy United logo, email address (info@lipodystrophyunited.org), and website link.
November 14, 2025 at 12:00 AM
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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 [email protected] and help us continue showing the power of connection
#lipodystrophyunited #lipodystrophy
November 12, 2025 at 12:32 AM
lipodystrophyunite.bsky.social
We’d love to highlight more of the incredible people who make up Lipodystrophy United. If you’d like to be featured on our website or social media, please send us your photos along with a short story about your journey.
📩 Email: [email protected] (use/consent forms will be provided)
A promotional graphic from Lipodystrophy United encouraging community members to share photos and stories. The left side shows a family portrait of Miranda, Sydney, and Jeremy Billington standing together in front of a stone wall, smiling. On the top right, a photo of Briana and Emery Steiner shows them standing by the water with a city skyline behind them. Below that, Athena Wendolowski is pictured with her arms raised joyfully near the river. At the bottom, text reads: “Connect with us! Share your stories and images to be featured across LU! Email us at info@lipodystrophyunited.org.
November 8, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
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 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.
November 5, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
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
November 4, 2025 at 12:31 AM
lipodystrophyunite.bsky.social
☕ This Coming Tea with LU: Partial Lipodystrophy Session! 💬
Join us on Tuesday, November 4th, from 6–7 PM CST for an open, supportive discussion. Come connect, share experiences, and learn from others who understand what you’re going through. 💙
👉 RSVP lipodystrophyunited.org/schedule-of-...
A cream and red graphic featuring a vintage teacup and saucer illustration. The text reads: “This coming Tea with LU. Calling all people with Partial Lipodystrophy. Tuesday, November 4, 2025, 6–7 PM CST. Link below.” The bottom includes the Lipodystrophy United logo, email address (info@lipodystrophyunited.org), and website link.
October 30, 2025 at 10:00 PM
lipodystrophyunite.bsky.social
“High LDL can be part of life with lipodystrophy — but knowledge is power 💪 #Lipodystrophy #RareDisease #Cholesterol #HeartHealth #LDL #LipodystrophyUnited”
October 29, 2025 at 9:02 PM
lipodystrophyunite.bsky.social
Join us on Thursday, October 23rd, from 6–7 PM CST for a welcoming session made for our newest community members! This is a great chance to learn about Lipodystrophy United, meet others in the community, and share your story in a supportive space.
RSVP: lipodystrophyunited.org/schedule-of-...
A cream and red graphic with a sketch of a teacup and saucer. The text reads: “Tomorrow’s Tea with LU — New Member Session! Thursday, October 23, 2025, 6–7 PM CST. Email info@lipodystrophyunited.org with any questions.” The Lipodystrophy United logo appears at the bottom with their website link.
October 22, 2025 at 9:00 PM
lipodystrophyunite.bsky.social
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 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.
October 13, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
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 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.
October 7, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
☕✨ It’s not too late! Join us for Tea with LU tomorrow, October 7th, at 6 PM CST for an open conversation session led by Kate Stratton.
Don’t miss this chance to connect and share with the community!
➡️ Register: lipodystrophyunited.org/schedule-of-...
A flyer from Lipodystrophy United promoting tomorrow’s Tea with LU. At the top is an illustration of a teacup and saucer with text that reads: “Tomorrow’s Tea with LU.” Below, in a red box, the text says: “It’s not too late! Don’t forget to join us tomorrow, October 7th, at 6 PM CST, for an open conversation session led by Kate Stratton. Register with the link below or on our website under ‘schedule of events’!” At the bottom are the Lipodystrophy United logo, website (lipodystrophyunited.org), and email (info@lipodystrophyunited.org ).
October 6, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
☕ 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
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)
October 2, 2025 at 10:01 PM
lipodystrophyunite.bsky.social
Just 26 days left until our Boston Community Day! 🎉 Join us Oct 25–26 at the Royal Sonesta for two days of connection, learning & fun. RSVP now to save your spot! forms.gle/WLZ17za8DWKy...
A flyer from Lipodystrophy United promoting the Boston Community Day Countdown. At the top is a group photo of smiling community members wearing matching hats. Large red numbers “26” are displayed in the center with the text “Days Left Until Community Day.” Below, text reads: “Join us October 25–26 at the Royal Sonesta in Boston! 10 AM Start Time.” At the bottom, bold text says: “RSVP with the link below. *Agenda will be provided upon RSVP.”
September 29, 2025 at 11:00 PM