Rare Disease Awareness

Patients that suffer from one (or more) of the nearly 7,000 rare diseases currently recognized have to fight for their diagnosis, treatments, and communication from medical providers. There are between 25-30 million people in America and 30 million in Europe suffering from rare diseases. For these patients being curious about their diagnosis and symptoms is just as important as advocating for themselves. Leapcure focuses on advocating for patients by improving research outcomes to support furthering the understanding of these diseases and treatment opportunities for patients. We strive for patient focused care by personalizing follow up with patients interested in participating in research studies. One of our patient success coordinators will call each interested candidate to gather insights and ensure a good fit. During the insight gathering process many patients voice that their reasoning for participating in clinical trials is out of desperation to feel better and live a more normal life. One patient that has been suffering from a rare form of anemia stated “This last year has been hard, I’ve had no quality of life. I don’t have any energy and just try to enjoy the good days. I just want to feel good.” Let’s start with bringing awareness and empathy to the community of people that are currently suffering to better the outcome for those to come.

https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases

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