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Supporting the uncommon heroes: Rare Disease Day 2024

Honoring Rare Disease Day

Though rare diseases are individually rare, 300 million people worldwide are living with a rare disease. As with most diseases, the physical, emotional, social, and economic burdens of rare disease on patients, caregivers, and families can be immense. Further, gaps in scientific knowledge can lead to long diagnostic and treatment journeys.

Patients and/or caregivers affected by rare diseases have often had to advocate for themselves and sometimes even educate their healthcare providers on the disease. JB Ashtin is proud to be working with our partners to improve the awareness of and education about rare diseases and the therapies being developed to treat them.

At JB Ashtin, we have had the honor of supporting our clients focused on developing therapies for rare diseases. such as congenital athymia (in which babies are born without a thymus and cannot fight off infection), Friedreich’s ataxia, a genetic neurodegenerative disease that affects the ability to walk and greatly reduces lifespan, and countless others. Diseases like these have devastating effects on the health of babies, children, and adults and can cause immense stress, isolation, and feelings of hopelessness for patients and their families.

While approved therapies are currently only available for about 5% of rare diseases, medical breakthroughs continue to drive progress towards therapies for more patients. This progress in research and treatments can help restore hope among patients and families coping with rare diseases. Through our medical communications work, we’ve helped translate the results of this important research to healthcare providers and payers, facilitated expert discussions about unmet needs and solutions, developed educational materials to address knowledge gaps, and created resources to answer tough questions from healthcare providers and patients.

We’re constantly inspired by the scientists, healthcare professionals, and advocates who dedicate their lives to learning more about rare diseases and how to treat them. We consider ourselves fortunate to support these rare disease champions, from supporting the clinical trials needed to develop new treatments to educating audiences on disease states and approved treatments. But if we’re being honest, we’re really in it for the patients. Please join us in celebrating Rare Disease Day by taking a moment to hear directly from some real heroes, the patients.