When I first got into this internship with Rare Genomics Institute (RGI), I had very little idea what we were going to do. All I knew was that it’s remote access (yay, I can sleep in after SHAD!) and has to do with rare diseases. When we all started, I found out we were working on updating and creating a new website that would have information and communities for hundreds of rare diseases.
Well that’s all well and good, but you might wonder what we do throughout our internship. The first three weeks have mainly been researching and creating informational packages on each rare disorder. This content is intended to be put up on RGI’s new website called RareShare for patients and experts to learn more.
Now we’re in the last week and it’s time to start putting all that work to good use! We’ve spent the better part of the past few days contacting researchers, experts, and patients for interviews to gain more information and feedback on our write-ups. This is a really cool experience getting out and interacting with the people who work with each rare disease and learn many aspects that we could never find just on the internet. As we head into the final days of our internship, we have begun working on creating mini websites that contain the information we researched, the interviews we…well interviewed (obviously)…and the many other resources that patients can use to learn more about their disease.
Throughout this internship I have learned a great deal and had very amazing experiences. These experiences range from time management (at some point you have to overcome the temptation to sleep in just because the work schedule isn’t set in stone), to learning a lot about many very rare diseases as well as talking to and learning from people who deal with the disorder and/or are doing their best to find treatments. Working with RGI was a truly great experience and I am sure I will carry it with me into the future!