What is R.A.R.E.?

R.are disease
A.wareness
R.easerach
E.ducation


Rare disease is, ironicially, not so rare. There are approximately 7000 known rare diseases, affecting nearly 30 million people in the US. Approximately 50% of those affected are children. 1 in 10 Americans are affected by a rare disease*.
Rare diseases are often under researched, under funded, and unrecognized by insurance companies and children do not get proper treatment or therapies. Policy development is needed to help promote education and treatment of rare disease. 

Race for rare is hosted by Jog for JoubertSyndrome (J4JS), a fund raising campaign benefiting the Joubert Syndrome and Related DisordersFoundation (JSRDF). Race for Rare raises awareness for the entire rare disease community and will specifically benefit the rare disease Joubert Syndrome(JS). JS is a rare neurological disorder estimated to affect approximately 1:100,000 (roughly 3,100) people in the US (but does not reflect confirmed cases)**.
JS has a wide range of effects including, decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing pattern and cognitive impairment. It can also involve the kidneys and liver and can become fatal if those body systems are affected.


Proceeds of this race will benefit the Joubert Syndrome and Related DisordersFoundationTake part in a RARE event and make a difference for rare disease! 


For more rare disease facts visit Global Genes Project
* source: Global Genes Project  
** source: Juric-Sekhar G, Adkins J, Doherty D, Hevner RF. Joubert Syndrome: Brain and Spinal Cord Malformations in Genotyped Cases and Implications for Neurodevelopmental Functions of Primary Cilia. Acta Neuropathologica (2012) 123 (5): 695-709. PMID: 22331178.