Recent Entries

• How do rare disease advocacy groups manage cross-border data

  by Akruti Sinha 4 hours ago
  If you are part of or interested in rare disease patient advocacy groups, understanding how cross-border data flows are managed is crucial. These groups work tirelessly to ensure that patient data is moved securely and legally across countries, enabling global research collaborations.   This f...

• Bridging Gaps: Indian Organizations Address Rare Disease

  by Akruti Sinha Jul 23
  Let’s admit it—when you talk about healthcare in India, rare diseases barely cut through a regular chai-time conversation. If you ever end up chatting about rare diseases, it sounds like something straight out of medical textbooks, right? But here’s the real deal: for millions ...