Lipodystrophy United

ALT A smiling woman wearing white-framed glasses and a black blazer holds open a printed publication featuring Lipodystrophy United’s “Voices of LU” project and research poster. The Lipodystrophy United logo appears in the upper left corner.

ALT A smiling woman wearing white-framed glasses and a black suit stands in front of a Galien Patient Summit and Prix Galien USA 2026 backdrop. She holds a trophy and a certificate recognizing Lipodystrophy United as a nominee for the 2026 Prix Galien Patient First Award. The Lipodystrophy United logo appears in the upper left corner.

ALT Flyer for an interactive Zoom Q&A titled “Pancreatitis & Mental Health.” The session features Lara Govendo, MA, LCPC, and Julie Wells of Give an Hour. Text invites attendees to bring questions for mental health experts to answer live. The event is Thursday, October 29 at 12 PM ET / 9 AM PT, lasts one hour, and is a cameras-off Zoom session. Patients, parents, partners, and caregivers are welcome. Registration is available through the link in the bio.

ALT A woman in a dark sleeveless outfit and white wrist corsage poses closely with a man wearing a navy suit and tie at Lipodystrophy United’s prom event. Both are smiling in front of a green decorative backdrop.

ALT Three attendees talk together at the prom. A woman in a patterned dress faces another attendee while a man in a suit stands beside them smiling. Other guests are visible in the background.

ALT A smiling woman wearing a small tiara holds a microphone and a star-shaped award while speaking during the Lipodystrophy United prom celebration.

ALT Two women sit together at the prom, appearing engaged in conversation or watching the event. One wears a black-and-white patterned halter top and the other wears a small tiara. A man is seated behind them.

ALT Lipodystrophy United graphic titled “EL-PFDD Summary.” It reports approximately 100 in-person attendees and 400 online attendees. Participant type is listed as CGL 9.4%, FPL 77%, AGL 3.1%, unknown 6.25%, unsure 3.1%, and other 1.56%. Age ranges are 18 or under 3%, ages 18–34 25.4%, 35–49 41.8%, 50–64 25.4%, and 65 or older 4.5%. When asked how much lipodystrophy interfered with daily life in the past 12 months, 43.1% said extremely, 43.1% significantly, 13.8% moderately, and 0% minimally or not at all. Words used to describe living with lipodystrophy include exhausting, lonely, debilitating, frustrating, overwhelming, tiring, and hellish. The graphic also notes that 62% chose fatigue or pain as the one symptom they would remove with a magic wand, and 87% reported that lipodystrophy significantly or extremely interferes with daily life.

ALT Lipodystrophy United graphic titled “What Patients Need From Treatment.” It summarizes five treatment priorities with patient quotes: durability and peace of mind, one treatment for the whole disease, reducing treatment burden just to function at baseline, earlier preventive access before irreversible damage occurs, and treatment that allows for greater quality of life. Quotes emphasize wanting long-lasting treatment, treatment of the disease as a whole, less day-to-day management burden, earlier intervention, and treatment as an “umbrella” to help weather the storms.

ALT Lipodystrophy United graphic summarizing key themes from the EL-PFDD meeting. It explains that the burden of lipodystrophy extends beyond lab results and can include hunger, fatigue, pain, brain fog, temperature regulation challenges, serious health complications, delayed diagnosis, stigma, fertility challenges, financial strain, and fear about the future. It also describes treatment burden from injections, multiple medications, diet and exercise, appointments, monitoring, travel, insurance challenges, and side effects. The text emphasizes that better lab results do not always mean better quality of life and that patients want treatments that reduce symptoms, prevent complications, and lessen the day-to-day burden of managing lipodystrophy. It closes by highlighting the strength and determination of the community and the message: “Real People. Real Lives. A Healthier Tomorrow Is Possible.”

ALT Graphic for a Lipodystrophy United and Give an Hour PFDD Attendee Debrief. Text says everyone is welcome and participants do not need to have attended in person. The event is October 6 at 6 PM CST via Zoom. The graphic notes that this will be a different conversation from the previous debrief and encourages past attendees to join again. Lipodystrophy United logo appears at the top left and Give an Hour logo at the bottom right.

ALT Graphic titled “Burdens of Lipodystrophy” featuring an iceberg. Above the waterline, labeled “Visible Burdens,” are physical changes and lab results. A quote reads, “Laboratory values only scratch the surface.” Below the waterline, labeled “Invisible Burdens,” are unrelenting hunger, severe pain, stigmatization, strain on relationships, extreme fatigue, organ damage, infertility and pregnancy loss, and mental load. The Lipodystrophy United logo appears at the top.

ALT Lipodystrophy United graphic announcing “It’s not too late to leave a comment!” with a large red number 11 and the text “More days to submit.” The background is a blurred photo from an in-person Lipodystrophy United event, with the organization’s logo in the upper left and lipodystrophyunited.org at the bottom.

ALT Graphic for a Lipodystrophy United and Give an Hour virtual debrief. Large text reads, “Give an Hour Debrief.” The event invites community members to join Julie and Ashley with Give an Hour to reflect on the EL-PFDD meeting and discuss tools and tips for carrying the weight of the meeting forward. The event is September 23 at 6 PM CST via Zoom. Lipodystrophy United logo appears at the top left and Give an Hour logo at the bottom right.

ALT Lipodystrophy United “25 Stories for $25K” campaign graphic featuring Meaghan wearing sunglasses and a gray tank top with medical monitoring electrodes visible on her chest. Her quote describes wanting just one good day a week when she can walk her dog, go to the park alone, or leave home without fear of passing out or having another medical emergency. The graphic encourages donations to help send patients to the EL-PFDD.

ALT Lipodystrophy United graphic featuring four people standing outdoors in a sunny park. Large red and blue speech bubbles above them read, “TAKE THE EL-PFDD PRE-SURVEY.” The Lipodystrophy United logo appears in the upper left corner.

ALT Lipodystrophy United “25 Stories for $25K” campaign graphic featuring Dena smiling in a white lace dress. Her quote explains that just as her life began to feel like it was improving, she learned she was at risk for serious health complications and that the only approved medication was no longer effective. The graphic encourages donations to help send patients to the EL-PFDD.

ALT Mallory poses outdoors in front of blooming white hydrangeas wearing a dark green formal dress and tiara. Colorful cutout-style text across the image reads, “Mallory has a question…”

ALT Mallory stands outdoors in front of blooming white hydrangeas wearing a dark green formal dress and tiara while holding a bright pink handmade sign that reads, “Will you go to prom with me?”