Patient and Caregiver Perspectives from the 2023 NORD Breakthrough Summit
We asked those impacted by rare disease to share their experiences and takeaways from the summit.
By Eric Monticello

It’s often said that rare diseases aren’t that rare. And the National Organization for Rare Diseases (NORD) Breakthrough Summit gives patients a chance to see that for themselves.
This year, 900 rare disease community members came together in person to network, share stories and gather information about thousands of rare conditions. CSL, whose medicines treat rare
diseases, attended the summit and shared information about bleeding disorders and policy changes that could benefit the patient community.

What did attendees representing various rare disease communities take away from the summit? We interviewed them to find out.
Click here to read the article.

Laura attended to meet and listen to rare disease experts, but most importantly to meet other rare disease advocates.  It was a wonderful way to connect. 

Laura spoke about The Bonnell Foundation and advocacy. The Prescription Drug Advisory Board (PDAB) is a hot topic. The rare disease community does not want it passed, but it sailed quickly through the Senate.  We’ve given amendments that include the patient voice to members of the House.  We’re hoping the House slows it down. 

Laura advocates at the Lansing Capitol.  She testified before the Senate Health Policy Committee, asking Senators to pass the Rare Disease Advisory Council (RDAC). This will give all stakeholders (Insurance, Pharma, patients, parents, doctors, etc). Laura was in good company with the sponsor, Rep. Jason Morgan, Tara Britt, RDII and Carolyn Sheridan with the National Organization for Rare Disorders (NORD).