The only thing that’s not rare about rare disease is the energy that the TrialCard team puts behind our 26 customers who manufacture Orphan Drugs and the patients they serve. At TrialCard, the patient is always our bottom line and that is especially true for patients with rare disease.
This year, Rare Disease Day is focused on research. Research that brings new therapies and new hope to patients with rare disease, half of whom are children. These patients present with common symptoms that often hide a more proliferative and degenerative disease. Patients are left with a lower quality of life. Due to the broad diversity of rare disorders and patients presenting with common symptoms, misdiagnosis is common and patients with the same rare disease can present with different symptoms. Often patients wait 4 to 11 years for a correct diagnosis. And even if diagnosed, there’s no guarantee that a therapy exists to slow the disease progression or alleviate the symptoms.
The rare disease community is working to ensure that experts, researchers, and clinicians are connected in as many ways as possible, and that clinical trials span the globe so we can pool resources as a community to get therapies across borders. Enormous progress is being made every day. Rare Disease Day is just one example of how a community can come together for the greater good.
So on behalf of the Orphan Collaborative Committee, we hope that you’ll take a moment today to learn more about rare diseases and how you can become #AwareAboutRare. We invite you to follow our friends at @RareDayUS today!
Associate Director, TrialCard Business Transformation
Chairman, Orphan Drug Collaborative