FOR IMMEDIATE RELEASE:
BioData 2022 Congress Implements New Patient Advocacy Initiative
London, United Kingdom / Basel, Switzerland – Tuesday, March 22, 2022 – Patient advocates and rare disease nonprofits are overjoyed that the medical conference organizer, Terrapinn, has created a new platform to include patient voices.
“This November, BioData World Congress returns to Basel along with three co-located events. We are so excited to announce that this year BioData World Congress will take place alongside Genomics Live, PharmAI, and Cheminformatics Live. This is Europe's largest conference covering big data in pharmaceutical development and healthcare and will bring together thousands of industry leaders” announces Terrapinn on the company’s call for speakers.
Dawn Ireland attended her first Terrapinn event at the World Orphan Drug Congress in 2017 in Washington DC. “I was so impressed that this company was so inclusive of patients and patient advocates. Most industry events forget that patients are the consumers and should be the focus of all events. Right away, I knew that I would be attending a lot of Terrapinn organized events” said Ireland, who is a patient advocate and president of CDH International, a global charity for Congenital Diaphragmatic Hernia patient support and research.
Ireland began speaking, chairing, and representing patients at Terrapinn’s BioData conference in Basel, Switzerland and World Evidence, Pricing and Access (EPA) Congress in Amsterdam. In March of 2021, she secured a block of time for patient advocates at the EPA’s virtual event by tapping into her network of other advocates and her relationship with the Terrapinn team.
In November of 2021, the BioData Congress was back to an in-person event and had a great attendance but there was a lack of patient advocates. She went to Chris Shanks, head of the EPA event and admin of the BioData, and asked for another block for patient advocates. Shanks agreed and gave Ireland 3 hours.
Ireland took the project to the Worldwide Rare Advocacy Partnership (WRAP), a new collaboration she co-founded with 4 fellow patient advocates. By the time the next meeting with Terrapinn was held, there were 15 well-known, well-respected patient advocates who were signed up to roll up their sleeves and bring Patient Advocacy to Terrapinn events in Europe.
“Sharing the rare patient voice at an international medical conference is so important to our patient groups. Patients and patient families want to be so much more than a number on a laboratory slide or a name on a registry. They want to be a real live human representation, not just their disease,” says Caryl Harris, co-founding partner at WRAP and Executive Director of Avery’s Hope, a patient assistance organization for the rare pediatric GI patient community.
Shanks responded by giving Ireland the WRAP team 3 days instead of 3 hours, and Terrapinn became the first company to officially incorporate an equal presence of Patient Advocacy at a medical industry event.
“Usually, medical conferences will give advocates and charities a discounted vendor booth, a few opportunities to speak at round tables or panels but Terrapinn has always shown Patient Advocacy as much respect as they show big Pharma and other Industry players. They treat us as equals and that’s how every medical conference should be. We are so grateful to them for leading the way in this important cause” says Ireland.
“Being able to share the human side to medical data gives researchers and medical teams an opportunity to see disorders and disease from a fully human perspective,” says Harris.
“I'm thrilled to finally see a conference organizer include the patient advocate voice on such a large scale. It's long overdue and perhaps the most important voice to hear. Thank you, Terrapin” says Terri Ellsworth, KOL Rare Disease Patient Advocate and the 3rd of 5 WRAP Co-Founding Partners.
Ireland and her partners at WRAP are looking for more Patient Advocacy leaders to speak on BioData, as well as corporate sponsors to cover their costs to attend the event. You can reach out to her at dawn.ireland@cdhi.org to participate.
BioData will take place on November 8-10th at the Basel Conference Center in Switzerland.
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