Rare Disease Month is observed the entire month of February. It is held in the second month of the year because it is the shortest month of the year and is recognized on the 28th (or 27th) day to highlight how uncommon these medical conditions are.
IdiopathicThe term idiopathic is used when there is no detectable reason for something. Click the term to read more Intracranial Hypertension (IIH) is considered a rare disease because it affects less than 1 out of every 100,000 people in the world. By definition, IIH affects women of child-bearing age. However, we know this disabling neurological condition afflicts men and children, women of all ages and has a spectrum of symptoms beyond what is described by Modified Dandy CriteriaCriteria used for diagnosing patients with IIH. Click the term to read more.
IIH is a debilitating neurological condition where elevated pressures in the brain can cause harmful and potentially irreversible effects on the body. Blindness, crippling headaches, and pulsatile tinnitus to name a few with no definitive treatment or cure.
RareDiseaseDay.org, National Organization for Rare Disorders (NORD), Global Genes, and Rare Disease Foundation are just a few organizations that promote awareness, advocacy, research, and education for the rare disease community. There are also a number of groups who provide evidence-based medicine, support, and resources at a state and local level such as IIH-Hub.com and Facebook.
Rare Disease Day is a time to promote awareness, create global recognition, patient and provider education, and scientific research. If you would like to share your medical journey through our platforms, click here. You are not alone.
