Why Social Media Matters Social media is a powerful tool for raising awareness about rare diseases. It connects global audiences, amplifies voices, and drives action. Steps to Create an Effective […]
Creating Social Media Campaigns That Spark Awareness Read More »
Advocating for rare diseases requires clear communication and compelling storytelling. Here’s how to effectively engage legislators: 1. Prepare Your Message 2. Craft a Clear Ask 3. Engage with Confidence 4.
How to Talk to Legislators About Rare Disease Policy Read More »
Low prevalence Rare Diseases are generally observed with low frequency in a specific population. In different countries, the definition of a Rare Disease may differ. For instance, in the USA,
Characteristics of Rare Diseases Read More »
Myth #1: Rare Diseases Affect Only a Small Number of People Myth #2: Rare Diseases Are Always Inherited Myth #3: There’s No Hope for Rare Disease Patients Myth #4: Rare
Breaking Down the Myths About Rare Diseases Read More »
What is PFIC 4? Progressive Familial Intrahepatic Cholestasis Type 4 (PFIC 4) is a rare genetic liver disorder that affects bile flow in the liver. It belongs to a group
Understanding PFIC 4: A Rare Liver Condition Read More »