Pathways To Trust is excited to be going to the upcoming World Orphan Drug Congress (WODC) – USA, in Boston, April 22-24! We hope you will come visit us at Booth #627 on the exhibit floor, and sit in on one of the panel discussions we are  participating in. Our participation in WODC – USA will help us deliver on our mission is to bring the needs of the rare disease patient, particularly individuals with Sickle Cell Disease and Ehlers-Danlos Syndrome, to the center of provider, institutional and industry healthcare treatment goals.

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Board of Directors member Tina Karunaratne will moderate the panel discussion, “Patient Perspective of Ehlers-Danlos Syndrome: From Diagnosis to Daily Life: The Long Road to Recognition and Support,” which will feature Pathways To Trust Patient Advocacy Director Donna Sullivan as a panelist. This fireside chat format discussion will address multiple obstacles to care that patients face including misdiagnoses and access to care, as well as the role of patient advocacy in meeting the needs of patients and caregivers. “I am privileged to be part of WODC-US,” Ms. Karunaratne stated. “It is inspiring to see the global community come together to address the challenges faced by patients affected by rare diseases. I believe that together, we can drive change and improve the lives of people living with rare diseases.”

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Ms. Sullivan will also be a featured panelist in the discussion, “Bridging the Gap: The Rare Disease Media Landscape and Industry Partners.” This event will explore the impact of storytelling and how media creators play a valuable role in enhancing the patient experience and fostering a deeper understanding of the more personal, unmet needs and challenges that patients navigate. As a rare disease mom and seasoned patient advocate who watched the system fail and traumatize two of my three kids and countless others,” said Ms. Sullivan, “I feel extremely lucky to be part of this discussion as we propose and encourage industry to consider the important role content creation and the media play in helping to gather insights and better understand the unmet needs of rare disease families. Healthcare media is growing and provides innovative, creative new opportunities to empower both patients and providers to work together towards better health outcomes.”

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You will be able to meet these individuals as well as other members of our team on the exhibit floor at Booth #627 where we will reprise, at the request of the WODC, the popular “Getting Our Ducks In a Row for Rare Disease” activity. We are inviting those who stop by to spin our Rare Duck Wheel, generously provided by Boston Casino Rentals, for the chance to win prizes. Winners are asked to take selfies of themselves with their “winning rare duck” in various locations throughout the WODC event space and post on social media, using the hashtag #quackforrare. Visit Instagram, Facebook and LinkedIn starting April 22 to follow the excitement.