PlatformQ Health was pleased to attend the National Organization for Rare DisordersⓇ (NORD) 2019 Rare Diseases & Orphan Products Breakthrough Summit. This year’s record-breaking NORD Summit included over 900 registrants in two days of powerful panels, breakout sessions and networking in our nation’s capital.

Every year, the Summit is a place where patient advocacy groups, government, and members of industry and academia gather to discuss the topics that are most important to rare disease communities, and find ways to advance orphan products. Aligning around this year’s theme – “The Time Is Now” – keynote speakers included CDER’s Associate Director for Strategic Initiatives, Theresa Mullin, PhD, FDA Acting Director Ned Sharpless, MD, and Health and Human Services Secretary Alex Azar.

“Effective treatments are often hard to come by, requiring years of expensive maintenance therapies. When successful therapies are developed, they’re not cheap. We need to ensure that Americans who suffer from rare diseases have ways to finance their care–while also making sure that our financing system can support innovation toward the cures we need,” said Secretary Azar.

 

NORD’s Exclusive Provider of Digital CME

For our team, it was an especially amazing experience this year because we recently partnered with NORD to create CME that prepares doctors to diagnose and treat rare diseases. The average time to diagnosis for rare disease patients is five to seven years, but by equipping doctors with the latest research we hope that together, we can help doctors spare families from such a long diagnostic odyssey. We have so enjoyed working closely with NORD, and just released the first program under the new partnership: an accredited program that helps clinicians learn about Tenosynovial Giant Cell Tumors. It was great to be able to catch up with the NORD team at our booth!

It was also a great opportunity to connect with partners we have worked with previously who are also NORD member organizations. We were excited to share outcomes from a 3-part series we created in collaboration with the GBS|CIDP Foundation International at our booth. The Foundation was integral to the success of those programs, and we had a great time reviewing them with their team. We’re working on new projects with GBS|CIDP Foundation International, so keep an eye out on NeuroSeriesLive and NeuroCareLive!

 

Interested in Supporting Rare Disease Education?

Pam Rattananont, MPH, our Vice President of Partnerships and Patient Education, remarked, “the rare disease space is changing rapidly – being able to hear from key policy and industry leaders at the Summit was almost as impactful as the opportunities we had to meet with the families who have motivated so much of the new research and drug development. I left even more energized to serve the rare disease community, and am looking forward to the new programs we’ll be releasing in partnership with NORD and their member organizations soon!” Get in touch with Pam here.

“Helping advocacy groups reach a broader audience of clinicians, caregivers, and patients is PQHE’s goal and inspiration,” added our Director of Digital Education Maria Arnone. “Through this strategic partnership with NORD, we’ll help even more individuals with rare disorders.” Reach out to Maria here.