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ORPHA:79086

Acquired generalized lipodystrophy

high confidenceDisorder

Also known as: Acquired lipoatrophic diabetes · Lawrence syndrome · Lawrence-Seip syndrome

Publications

378

71.5th percentile

Trials

0

Interventional, condition-specific

Researchers

1,019

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare lipodystrophic syndrome characterized by loss of adipose tissue, and is a syndrome of insulin resistance that leads to increased cardiovascular risk. Acquired generalized lipodystrophy is related to a selective loss of subcutaneous adipose tissue occurring exclusively at the extremities (face, legs, arms, palms and sometimes soles).

How rare: How common this is has not been clearly measured.

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (2)

acquired generalized lipodystrophy · acquired lipoatrophic diabetes

Research stages

Trial readiness signals

Where this condition sits on an open-data research pipeline — not how close a treatment is, and not medical advice. Empty stages often mean “not in these databases under this Mondo ID,” not “impossible.”

4/6 stages with a signal

No specific-condition interventional trial, but broader-category trials exist — discuss eligibility with a clinician.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    378 matched papers (243 in last 10 years) Source

  3. Phenotype characterisedPresent

    28 HPO annotations (e.g. Generalized lipodystrophy; Progeroid facial appearance; Hypertriglyceridemia) Source

  4. Animal modelNot found

    No Alliance genotype “model of” associations via Monarch for these Mondo IDs

  5. Orphan designationPartial

    2 EMA designations (none yet with FDA orphan-indication approval) — e.g. Mibavademab Source

  6. Interventional trialPartial

    None under the specific name; 7 for broader category generalized lipodystrophy

Biology

Genes and phenotypes

Gene–disease validity from GenCC, plus phenotypes and animal models joined from Monarch Initiative via Mondo ID — not a clinical diagnosis aid.

Do we know what causes it?

Not yet — the cause hasn't been pinned down in GenCC.

No strong gene–disease assertion joined for this Orphanet entity.

Phenotypes (Monarch / HPO)

28

Associated phenotypes · MONDO:0019193

  • Generalized lipodystrophy
  • Progeroid facial appearance
  • Hypertriglyceridemia
  • Generalized hyperpigmentation
  • Insulin-resistant diabetes mellitus

Showing 5 of 28 — open Monarch for the full list.

Animal models (Monarch / Alliance)

None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.

Monarch fetch 2026-07-29

Therapies

Designations, candidates, and chemicals

FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.

Orphan designation (FDA · EMA)

2

Designations · no FDA orphan-indication approval yet

  • EMA MibavademabTreatment of Lawrence syndrome · 21/03/2024 · PositiveEMA designation
  • EMA Metreleptin (Myalepta)Treatment of Lawrence syndrome · 17/07/2012 · PositiveEMA designation

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

No drugs or clinical candidates returned for this Mondo ID on Open Targets.

CTD chemicals (MyDisease.info)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

378

378 papers have ever been published on this condition (under this name). For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.

378 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).

243 in the last 10 years · high confidence · 71.5th percentile (publications denominator)

Phrase hits: 378 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,019

Distinct author names in 200 sampled papers — named people below.

Who's working on it?

No interventional trial matched this name; these authors publish on it in the sampled literature — a practical starting point for contact.

  1. 01
    Brown RJ20 papers · 2026

    National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA. brownrebecca@niddk.nih.gov.

    Papers in Europe PMC
  2. 02
    Oral EA13 papers · 2026

    Department of Internal Medicine, University of Michigan Medical School and Health Systems, Ann Arbor, MI, USA.

    Papers in Europe PMC
  3. 03
    Garg A12 papers · 2025

    Division of Pediatric Endocrinology (N.P., G.T.), Department of Pediatrics, UT Southwestern Medical Center, Dallas, Texas 75390; Hospital Universitario Prof. Edgard Santos (C.A.), Pediatric Endocrinology Unit, Faculty of Medicine Federal University of Bahia, 401157-190 Salvador, Bahia, Brazil; Division of Pediatric Endocrinology and Diabetes (J.v.S., M.W.), Department of Pediatrics and Adolescent Medicine, University of Ulm, 89075 Ulm, Germany; and Departments of Pathology and Pediatrics (D.R.), and Division of Nutrition and Metabolic Diseases, Department of Internal Medicine (A.G.), UT Southwestern Medical Center, Dallas, Texas 75390.

    Papers in Europe PMC
  4. 04
    Akinci B11 papers · 2026

    Dokuz Eylul University School of Medicine, Izmir, Turkey.

    Papers in Europe PMC
  5. 05
    Araújo-Vilar D10 papers · 2024

    Department of Medicine, University of Santiago de Compostela, Santiago de Compostela, Spain.

    Papers in Europe PMC
  6. 06
    Vigouroux C8 papers · 2024

    Endocrinology Department, Université Paris 06, DHU i2B, AP-HP, Saint-Antoine Hospital, Paris, France.

    Papers in Europe PMC
  7. 07
    Wabitsch M8 papers · 2025

    Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, Ulm University Medical Center, 89075 Ulm, Germany.

    Papers in Europe PMC
  8. 08
    Gorden P7 papers · 2018

    National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA.

    Papers in Europe PMC
  9. 09
    Santini F7 papers · 2026

    Obesity and Lipodystrophy Center, Endocrine Unit, University Hospital of Pisa, Pisa, Italy.

    Papers in Europe PMC
  10. 10
    Ceccarini G6 papers · 2026

    Obesity and Lipodystrophy Center at the Endocrine Unit, University Hospital of Pisa, 56126 Pisa, Italy.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

0

interventional trials for this specific condition

No interventional trial testing a treatment matched this specific condition name on ClinicalTrials.gov (observational studies and pan-disease registries are listed separately when present). 7 trials are registered for generalized lipodystrophy, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 11 September 2026 · last trial check 11 September 2026

No matched interventional trials. This is true for 77.2% of diseases in the trials denominator (5501 of 7126). Here are the researchers publishing on it.

high confidence · 38.6th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.

7 interventional trials matched generalized lipodystrophy, the broader category — listed below. Those studies are not counted in the condition-specific total.

Broader category: generalized lipodystrophy

7

Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.

Worth raising with a clinician. How we count trials.

Recruiting under the broader category

Other registries (secondary)

Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.

raw 9 · after dedupe 9 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 9 · dropped 0 · fetched 2026-07-30

Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri

No secondary-registry studies passed dual-model relevance for this condition name (after dedupe).

Uncertain / not reviewed (9)

Where to find support

Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.

Orphanet entry for Acquired generalized lipodystrophy — check Associations / patient organisations on that page.

India — NPRD

Last verified 2026-07-26

This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.

Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.

How we counted this

Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored on the overview but are not added to the query string.

"Acquired generalized lipodystrophy" OR "Acquired lipoatrophic diabetes" OR "Lawrence syndrome" OR "Lawrence-Seip syndrome"

Run this search on Europe PMC

ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):

"Acquired generalized lipodystrophy" OR "Acquired lipoatrophic diabetes" OR "Lawrence syndrome" OR "Lawrence-Seip syndrome"

Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"generalized lipodystrophy"

Query health: ok — strategies attempted: phrase; with hits: phrase

Run this search on ClinicalTrials.gov

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-27T01:55:06.913Z