February 28th marks Rare Disease Day, a dedicated occasion to raise awareness about rare and orphan diseases. The World Federation of Neurology (WFN) Rare Neurologic Diseases (RND) Specialty Group emphasises that the majority of rare diseases involve the nervous system, making neurologists key clinicians in diagnosis and care.
A recent publication “Awareness and Care Practices for Rare Neurologic Diseases Among Senior Neurologists: A Global Survey”1 by the RND Specialty Group highlights the issues:
- Rare neurologic diseases (RNDs) are difficult to diagnose and treat.
- Most respondents agree RND patients should receive timely and effective care but there are socioeconomic differences across countries to diagnosing RNDs and potential disparities in resources and preparedness for RNDs.
Despite advancements in understanding the pathogenesis of these conditions and, in some cases, therapeutic progress, rare diseases remain under-recognised among general practitioners. Many healthcare professionals are not fully informed about the diagnostic possibilities, available treatments, and preventive measures for these disorders.
To improve outcomes and quality-of-life for RND patients, the survey concludes efforts should focus on improving diagnostic capabilities, fostering collaboration among neurology centres, and promoting education on the unique challenges and treatment options of RNDs.
- Jang DG, Federico A, Savelieff MG, Grisold W, Mancuso M, Molnar MJ, Feldman EL, Reynolds EL. Awareness and care practices for rare neurologic diseases among senior neurologists: A global survey. Journal of the Neurological Sciences. 2025 Mar 15;470:123395.
Further information
About Rare Diseases Day
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. It is a patient-led initiative where everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
Find out more on www.rarediseaseday.org ⧉
About the WFN Rare Neurologic Diseases Specialty Group
For information about the WFN Specialty Group on Rare Neurologic Diseases, contact Prof. Antonio Federico (Chair of the WFN RND SG) or Jade Levy (WFN).
Web design by Tribal Systems