In a milestone for India's rare disease community, the Government of Andhra Pradesh has begun formal consultations on a dedicated state policy for rare diseases. The Directorate of Medical Education hosted a first-of-its-kind stakeholder conference at Dr. NTR University of Health Sciences in Vijayawada, drawing together government officials, clinicians, researchers, and patient organizations to shape the draft policy. State Health Minister Satya Kumar Yadav joined virtually to reaffirm the...

Rare Disorders New Zealand's fundraiser "Neck's Best Thing!" have raised an outstanding $1,330 , directly supporting the 300,000 Kiwis living with rare conditions. This generous contribution is a shining example of how local community spirit can create real, lasting impact for the rare community by strengthening Rare Disorders NZ's essential work in navigation support, lived-experience storytelling, and national advocacy - helping ensure people with rare conditions continue to be advocated...

This is a story about fighting against time, frozen bodies, and more than 150 years of medical despair. In China, public awareness of ALS has become closely associated with one name: Cai Lei , former Vice President of JD.com . After his diagnosis, he chose not to wait, but to act -building the world’s largest patient-centered ALS research data platform and accelerating drug development at an unprecedented pace. What began as one man’s response to illness has grown into a collective effort,...