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Putting the patient first: Moving from patient communities to patient co-creation in rare disease

Walter Grubb, VP, Consulting; Kate Dettbarn, Group Creative Director; Sarah Brown, Director of Publications Strategy; Judith Anders, Directors of Publications Strategy; Maria Katsarou, Senior Consultant; Natasha Patel, Head of Insight; Mariam Bibi, Senior Director, Global RWE | 2/21/2024

This Rare Disease Awareness Month, we explore the role of patient communities as essential partners in drug development and commercialization and as a vital lifeline for patients and caregivers navigating rare disease diagnosis, treatment, and care. 

According to the National Organization for Rare Disorders (NORD), there are more than 7,000 different rare diseases, impacting small patient populations, with 95% lacking any FDA-approved treatment. This year, Rare Disease Day falls on the rarest day of the year, February 29th. At Avalere Health, we are partnering with NORD to highlight the need for increased awareness and support for those affected.

For patients with rare diseases, the long journey to diagnosis, symptom management, and treatment is often lonely and isolating. Communities, set up by patients and caregivers, are a lifeline for helping patients better understand their disease, learn about treatment options, and gain holistic advice for living with a rare disease. These small but dedicated groups are essential for driving fundraising, information sharing, education, and working with regulators and policymakers to raise awareness and drive access to treatments. Perhaps most importantly, these communities mean patients can finally build connections with a diverse network of people who share their experiences, the highs and lows, and the challenges and opportunities in finding support and treatment.

This Rare Disease Month, we gained insights from patients and spoke to experts across Avalere Health with deep experience collaborating with communities. We explored the support these groups require, their role as advocates for better research and treatment options, and their essential role in optimizing the drug development process. Importantly, we discussed the right moments for biopharmaceutical companies to partner with them and when to step back to build authentic relationships that support patients beyond driving commercial success.

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