Adhering to current clinical guidance supports evidence-based assessment, informs decision-making, and helps reduce complications in the treatment and management of rare diseases. Ongoing review of recommendations and guidance enables clinicians to improve evaluation and management, which supports better patient outcomes.
Today’s rundown features some of the latest guidelines and clinical guidance for a variety of rare diseases and rare disease groups across the healthcare continuum. We selected to the following five based on engagement level. The guidance is arranged alphabetically and was published between January 1, 2026, and July 20, 2026.
Top Five Rare Disease Guidance Published in 2026 So Far
- Diagnosis and Management of Severe Acquired Aplastic Anemia
- American Society of Hematology (ASH)
- March 2026
- Diagnosis of Light Chain Amyloidosis
- American Society of Hematology (ASH)
- January 2026
- Inborn Errors of Immunity
- American College of Allergy, Asthma, and Immunology (ACAAI), American Academy of Allergy, Asthma & Immunology (AAAAI)
- April 2026
- Management of Women with Type 2B von Willebrand Disease During Pregnancy and Postpartum
- International Society on Thrombosis and Haemostasis (ISTH)
- June 2026
- Treatment of Adults with WHO Grade II Diffuse Glioma
- Congress of Neurological Surgeons
- April 2026
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