This Wednesday, I had the honor of speaking on the Patient Advocate Panel at the “InnovationPharm Event” hosted by Siren Interactive, in conjunction with the 7th Annual Rare Disease and Orphan Drug Leadership Congress in Philadelphia, PA.
The round-table discussion over dinner focused on how pharmaceutical companies can safely and effectively engage with rare disorder patient communities. I brought my insight as a patient managing a rare disorder with an FDA-approved treatment available.
The other Patient Advocate Panelists included Dominique Friend, Published Author and Sickle Cell Disease Activist; Pat Furlong, Founder and President of Parent Project Muscular Dystrophy; and Katherine Leon, SCAD Patient Advocate and WomenHeart Champion.
Meeting these women was a renewal of spirit for me. The illnesses we advocate for may be very different, but our shared challenges and triumphs were uncanny. I felt my community growing! We are not alone.
While in town, I attended 7th Annual Rare Disease and Orphan Drug Leadership Congress hosted by CBI. Many presenters spoke of putting the patients’ experience first. I wanted to high-five these presenters!
There are over 7,000 rare diseases, and many life-threatening conditions are without treatment. I met parents who lost children to rare diseases. I was humbled by their bravery.
For more info: visit The Rare Project and NORD.