Bionews Insights:

Living Rare in Our Own Words

Living with a rare disease presents a journey fraught with difficulty, characterized by delays in diagnosis, limited treatment options, and the necessity for self-advocacy. Patients often endure years of uncertainty, consulting numerous healthcare providers before finding clarity, only to encounter a landscape where effective treatments are either scarce or difficult to access. The lack of awareness among healthcare professionals can exacerbate this experience, resulting in misdiagnoses and the dismissal of symptoms. Moreover, the emotional impact is significant, demanding persistence and resilience from patients. Engaging with rare disease communities, both in-person and online, becomes essential in navigating the healthcare system, as individuals seek the support, answers, and hope they need on their journey. 

Bionews is committed to improving awareness and access to resources for those affected by rare diseases. Marcella Debidda, alongside Ryan Golley, Brad Dell, Kerry L. Wong, and Brandi Lewis, teamed up with the objective of gaining critical insights from our rare communities to further amplify and highlight the challenges and perspectives to influence meaningful change. Below is a visual representation of our findings and takeaways.