BIO Rare Disease Summit
by Tony Samuel

The 2019 BIO Patient & Health Advocacy Summit in Washington D.C. brings together academia, pharma, patient advocates and other stakeholders together in one venue, to discuss the latest health policies, trends and best practices in the rare disease community.

Topics covered included Navigating the FDA, Closing the Gap: Partnering to Invest in Areas of Unmet Need and the Art of Storytelling.

One panelist explained the importance of telling a story when discussing data makes to make it more memorable. The congressional keynote address was given by Sickle Cell legislative champion and South Carolina United States Senator Tim Scott.

Patient advocates shared personal stories and discussed the importance of bringing other stakeholders into the discussion; especially insurance companies.

The Art of Storytelling event was one of the most engaging session. For care givers and patient advocates in the rare disease community, we understand the importance of bringing awareness and advocating on behalf of our loved ones.

As PMS family caregivers, we understand the importance of ensuring the patient view is front and center. Our loved ones fully deserve to live a happy and quality life. Measuring success in terms of quality of life cannot be the sole purview of the FDA, the scientific community and/or even scientist. Patient advocates consistently emphasized the need to meet the patient where they are and measuring the quality of life based on what is important to the patient.

The voice of the patient must be the loudest voice when it comes to measuring quality of life. BIO Summit is an important event that helps to bridge the gap between patients, regulatory bodies and all pertinent stakeholders. This event is crucial to developing partnerships and collaboration within the rare disease community.