#rarediseaseday

Wednesay is Rare Disease Day 2018! This is a day dedicated to people who live with rare diseases, awareness of rare diseases, fundraising for research, treatments and cures, and a day for those of us with rare diseases to share our stories. graphic about rare disease day with logo

Living with a rare disease can be incredibly isolating and at times, frustrating, scary and  challenging. You get used to knowing more (or anything) about your disease even when talking to medical professionals. You get anxious trying new things or going new places in case something happens and the medical staff don’t know your condition. Every year during rare disease day I strive to spread awareness not only for rare diseases (most of which have no cure), but also for orphan drugs and the researchers and companies supplying them. Orphan drugs are drugs that are designed for a problem or disease that is rare. They often struggle to find funding and complete clinical trials and most do not get through the trial phase. Additionally, if these medications or therapies do make it past clinical trials, they are often ridiculously expensive (think >$10,000).

For a list of known rare diseases click here

 

rare-disease-cloud-e1444332661951.jpg

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s