When your child gets sick, you hope there will be a treatment available for them. For many patients with rare disorders, those treatments don't exist. This situation is made even more tragic when the science exists to develop a treatment, but the cost and complexities of development have slowed or even stopped progress.
RareArtist.org was created for artists affected by a rare disease.
Click Here to view the gallery.
We could be doing more with the science we already have... The CureTheProcess campaign strives to inspire science-driven public policy that will increase the predictability of the regulatory process for rare disease treatments. Our goal is to give even the rarest diseases access to the accelerated approval pathway and put orphan treatments back on the fast track.
May 15 is International MPS Awareness Day.
Before I recall my own thoughts on MPS Awareness Day, I wanted to let you know what this day is for: On International MPS Awareness Day we:
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