Imagine growing up frequently ill and unable to identify the underlying cause. For many folks living with a rare disease, this is their reality. According to a survey conducted on behalf of Global Genes, the average rare disease patient can spend nearly five years and visit seven physicians before getting an accurate diagnosis. Even once they find out their condition, meeting patients with the same, rare disease can be difficult.
“When you listen to the patient – one common theme that emerges is the need for access to diagnosis, awareness and resources,” said Dina Inverso, U.S. Leader, Reimbursement and Patient Engagement, CSL Behring. “Our first-ever patient advocate summit was created to help deliver on our promise to help patients lead full lives by connecting with one another to share experiences and inspiration.”
More than 40 patients living with rare diseases including primary immunodeficiency, chronic inflammatory demyelinating polyneuropathy, hereditary angioedema, hemophilia, von Willebrand disease and alpha-1 antitrypsin deficiency were on-hand at the multi-day meeting in King of Prussia, Pennsylvania, this week to share stories and discuss how they can help others living with similar conditions.
