- In April 2024, the National Institutes of Health (NIH) in the U.S. expanded its Rare Diseases Clinical Research Network to include multicentric reticulohistiocytosis under its inflammatory and autoimmune disease programs. This inclusion aims to facilitate deeper understanding of MRH’s pathophysiology through patient registries and biomarker research. The initiative highlights growing governmental support for ultra-rare conditions and enhances collaboration across clinical and research institutions focused on rare systemic diseases.
- In March 2024, Orphalan SA, a biotech company specializing in orphan diseases, announced a clinical research collaboration with European hospitals to assess the off-label efficacy of IL-1 inhibitors in patients diagnosed with MRH. This development marks a strategic push toward repurposing existing biologics for MRH treatment and reflects the industry's broader commitment to addressing gaps in therapeutic options for rare rheumatologic disorders
- In February 2024, GlobalSkin (International Alliance of Dermatology Patient Organizations) launched a rare skin disease awareness campaign, including multicentric reticulohistiocytosis, aimed at improving early diagnosis through increased awareness among primary care providers and dermatologists. The campaign, supported by digital and clinical outreach, signifies a growing movement to integrate patient voices and real-world evidence into rare disease policy and care delivery
- In January 2024, University Hospital Zurich, Switzerland, initiated a multi-center observational study to document the long-term progression of MRH and responses to immunomodulatory therapies across diverse populations. The project is designed to generate standardized clinical data that could support future regulatory filings and treatment guidelines, reflecting academia’s growing role in driving therapeutic innovation for rare diseases
- In January 2023, the European Medicines Agency (EMA) granted orphan drug status to a novel TNF-alpha inhibitor candidate being evaluated for off-label use in severe MRH cases. This designation facilitates accelerated development and regulatory support, underscoring the need for dedicated therapies to treat MRH. It also reflects increasing recognition among regulatory bodies of the urgent unmet needs in this disease space
