Rareatives.com, a premier patient-led publication dedicated to amplifying the voices and stories of the rare disease community, is proud to announce its official partnership with the World Orphan Drug Congress (WODC) USA 2026. Organized by Terrapinn, the congress will take place at the Thomas M. Menino Convention & Exhibition Center in Boston from June 9-11, 2026.

As a supporting partner, Rareatives joins America’s leading rare disease and orphan drug event in amplifying rare disease awareness, fostering collaboration to support the rare disease community, and discussing the latest innovations within the orphan drug space.

The World Orphan Drug Congress brings together over 2,000 global stakeholders, including pharmaceutical executives, government regulators, patient advocates, and biotech innovators, to brainstorm solutions for advancing orphan drug development and improving patient access to life-saving therapies.

“Storytelling is the bridge between clinical data and the human experience, and I’m excited to meet and speak with stakeholders across the rare disease ecosystem,” said Jessica Lynn, Founder of Rareatives. “Rareatives’ partnership with the World Orphan Drug Congress keeps the patient perspective at the heart of the industry’s most critical conversations around orphan drug development and the innovation needed to treat rare diseases.”

The 2026 agenda is set to feature thematic streams on AI and digital health, clinical development, pricing and reimbursement, and gene therapy. 2026 speakers include:

• Annette Bakker, CEO, Children’s Tumor Foundation
• Michael Eging, Executive Director, Rare Access Action Project
• Federico Goodsaid, SVP Regulatory, Ariana Pharma
• Emil Kakkis, Chief Executive Officer, Ultragenyx Pharmaceutical
• Robert Long, Executive Director, Uplifting Athletes

Join Rareatives in Boston

Rareatives is pleased to offer our community a special registration discount.

• General Attendees: Use code RAREATIVES at checkout to receive 20% off your World Orphan Drug Congress pass.
• Patient Groups & Nonprofits: Both Terrapinn and Rareatives are committed to ensuring the rare disease community is well-represented and that their needs and interests are heard. Patient advocacy groups, individual patients, and nonprofits are encouraged to contact Rareatives directly at jessica.lynn@rareatives.com for special pass arrangements.

To register, visit the official event website.

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About Rareatives

Rareatives is a patient-led publication where unique stories from the rare disease community become headline news. Founded by rare disease journalist Jessica Lynn, Rareatives aims to flip the script on rare diseases by moving beyond awareness into actionable advocacy. Through storytelling, Rareatives encourages researchers, doctors, and the public to rethink the narrative of rare conditions.

About World Orphan Drug Congress

The World Orphan Drug Congress is an award-winning series of conferences and exhibitions that have grown to become the largest and most established rare disease meetings of its kind across the globe. It offers a unique opportunity to explore cutting-edge developments, forge partnerships, and drive progress in rare disease therapy innovation.

For over 15 years, the World Orphan Drug Congress has served as the meeting point for the entire orphan drug value chain. From regulation and policy to global pricing and advanced therapies, the Congress provides a platform for stakeholders to discover the latest breakthroughs in the field.

About Terrapinn

Terrapinn is a global events company that has been sparking ideas, innovations, and relationships for over 30 years. With a focus on technology and innovation that changes people’s lives, Terrapinn curates world-leading conferences and exhibitions across various sectors. Their mission is to bring together the agitators of change to transform business and society.

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Media Contact: Jessica Lynn, Founder (Rareatives), jessica.lynn@rareatives.com, Rareatives.com