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Haemophagocytic lymphohistiocytosis

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Where research stands todayUpdated 15 Nov 2026
Trial-stage treatments you can join–open now
in United States
Studies published in the last 12 months00 in people · 0 in animals · 0 in the lab
Support organisations2organisations
in United States1 helpline
Offer tissue or dataGive a sample or your health data to research.Approved treatmentsMedicines approved for haemophagocytic lymphohistiocytosis around the world.“Miracle cure” fact checkerSaw a cure online? Check it before you pay.

Trial-stage treatments and research studies you can join

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Get notified of new trialsUnited States, all cities, all phases
Your ageShows only trials that take people your age.
Phase
  1. Trial-stage treatmentPhase 2/3Taking people
    Phase 2/3 trial: ELA026
    Atlanta, United StatesAlso Birmingham, Cleveland, Dallas, Houston, Los Angeles, New York, Philadelphia, Phoenix, …Age 6+
  2. Trial-stage treatmentPhase 2Taking people
    Phase 2 trial: Ruxolitinib, Etoposide, Dexamethasone
    Irvine, United StatesAlso Sacramento, San Diego, San FranciscoAge 18+
  3. Trial-stage treatmentPhase 1Taking people
    Phase 1 trial: Ruxolitinib
    Baltimore, United StatesAge 18 to 99
  4. Trial-stage treatmentPhase 2Soon in United States
    Phase 2 trial: ALLOGENEIC CD34+ ENRICHED AND CD45RA- DEPLETED PBSCs
    Seattle, United StatesAge 0 to 50
  5. Trial-stage treatmentPhase 2Taking people
    Gentler preparation before stem cell transplant for non-cancer blood and immune disorders

    Tests a gentler preparation before stem cell transplant in young people with non-cancer disorders.

    Pittsburgh, United StatesAge 0 to 55
  6. Research studyTaking people
    Observational study: Lymphohistiocytosis, Hemophagocytic
    Bethesda, United StatesAlso PittsburghAge 18 to 120
  7. Research studySoon in United States
    Observational study: Hemophagocytic Lymphohistiocytosis (HLH)
    Ann Arbor, United StatesAlso Atlanta, Birmingham, Boston, Charlotte, Cincinnati, Columbus, Dallas, Houston, …Up to age 80
  8. Research studyTaking people
    Registry collecting health information on people with rare diseases

    Collects voluntary health information from people with rare or undiagnosed conditions for future research.

    Sioux Falls, United States
  9. Research studyTaking people
    Observational study: Hemophagocytic Lymphohistiocytoses
    Cincinnati, United States
  10. Research studyTaking people
    Studies treatment outcomes in people with lymphoma and a rare blood disorder

    Describes how people with lymphoma and HLH respond to treatment.

    Birmingham, United States
  11. Research studyTaking people
    Collects data on stem cell transplants for non-cancer blood and immune disorders

    Collects data on a reduced-intensity transplant in people with inherited immune, blood, or metabolic disorders.

    Pittsburgh, United StatesAge 0 to 60

Support organisations

Patient organisations and helplines in United States, for you and your family.

We have no organisations for this disease listed in United States yet. General support there is below.

General support in United States

  • 988 Suicide & Crisis Lifeline

    US national 24/7 free and confidential lifeline for anyone in suicidal crisis or emotional distress, reachable by calling or texting 988 or by chat.

    988lifeline.org
  • MedlinePlus

    Free, easy-to-read health information service of the US National Library of Medicine (NIH) on diseases, conditions, drugs and wellness.

    medlineplus.gov

International organisations

  • Histiocytosis Association

    Supports patients and families with histiocytic disorders, including HLH, funds research and lists expert doctors.

    +1 856-589-6606histio.org
  • Jeffrey Modell Foundation

    Helps people with primary immunodeficiency find expert doctors, funds research and offers free genetic sequencing.

    info4pi.org

Patient organisation umbrella bodies

Offer tissue or data

There are three ways to help research move faster.

Give tissue or bloodA biobank stores your sample so many research teams can use it.No open programme yet
Share your health dataA patient registry collects your health data, without your name, for research.How to join
Take part as a healthy volunteerStudies also need people without the disease, for comparison. Family and friends can help.Volunteer

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  1. Is there a published study in people?
  2. Can I have the full price in writing?
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“Cures” others already fact-checked

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