Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
The documentation for autoimmune lymphoproliferative syndrome type 1 is limited due to its rarity and the fact that it affects fewer than 1 in 100,000 individuals worldwide. This low prevalence results in fewer systematic clinical studies and data collection efforts. Additionally, the genetic basis was only recently identified, and ongoing research is needed to fully characterize the clinical features and management strategies for affected individuals.
To navigate your care effectively, seek out a hematologist or immunologist with experience in autoimmune disorders and lymphoproliferative syndromes. Genetic counseling may also be beneficial given the genetic basis of the condition; you can find a genetic counselor through the National Society of Genetic Counselors at https://www.nsgc.org. Participation in clinical trials may provide access to cutting-edge treatments and contribute to the understanding of ALPS. Although there are currently no patient organizations identified specifically for ALPS type 1, connecting with broader autoimmune disease support groups may provide additional resources.
Currently, there are six active clinical trials exploring various aspects of autoimmune lymphoproliferative syndrome type 1. These trials may focus on understanding the disease better, testing new treatment approaches, or assessing the effectiveness of existing therapies. For more information about these trials, you can visit ClinicalTrials.gov and search for 'autoimmune lymphoproliferative syndrome type 1' at https://clinicaltrials.gov/search?cond=autoimmune%20lymphoproliferative%20syndrome%20type%201.
Actionable guidance for navigating care for autoimmune lymphoproliferative syndrome type 1
To navigate your care effectively, seek out a hematologist or immunologist with experience in autoimmune disorders and lymphoproliferative syndromes. Genetic counseling may also be beneficial given the genetic basis of the condition; you can find a genetic counselor through the National Society of Genetic Counselors at https://www.nsgc.org. Participation in clinical trials may provide access to cutting-edge treatments and contribute to the understanding of ALPS. Although there are currently no patient organizations identified specifically for ALPS type 1, connecting with broader autoimmune disease support groups may provide additional resources.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.