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FSR is excited to share some breaking news from the world of rare disease research that could have a huge impact on the future of diagnosing and treating rare diseases worldwide. The International Rare Diseases Research Consortium (IRDiRC) has released an ambitious...read more
Finding out you have a rare and chronic illness can be extremely hard to deal with. Building a strong support system of loved ones can help make the journey easier. However, it can be extremely difficult to talk about your illness with your loved ones....read more
Tracking your fitness may be a way to help manage symptoms and side effects for sarcoidosis patients. As many sarc warriors know, it can be extremely difficult to stay active when you're living with sarc. Between the chronic pain, fatigue, shortness of...read more
The first ever meeting of the FDA’s new Patient Engagement Advisory Council (PEAC) will be this fall, as they host their first open forum focusing on the topic of clinical trials. This council came about due to legislation passed in 2012 that required the...read more