How the rare disease community can help Mark2Cure help rare disease research

Join us now! click here!

I used SavingCase’s tweet because it highlights how important the internet has become for connecting people and how people share information. (I might have missed Susannah’s piece if not for that tweet.)

That patient-patient connection is number three in a list by Ilana Jacqueline, who wrote the Global Genes’ Rare Daily piece about empowering moments felt by people living with a rare disease. These patient-patient connections not only provide support, information, and a measure of comfort; they can grow into powerful advocacy groups eventually connecting (and often funding) researchers investigating their disease. In many cases the patient becomes the educator (educating doctors was #4 in Ilana’s list) and expert on what is already known about that disease, but researchers still play an important role in expanding that knowledge base.

This post was originally written for Mark2Cure and can be viewed in its entirety here.

Advertisements