Patient advocacy interaction with orphan drug companies: accelerating the discovery and development of treatment in rare hereditary diseases

CENTOGENE Headquarters

Global experts, patient advocacy groups, and academia gather to address the partnership potential between patient advocacy groups and orphan drug companies

­­CENTOGENE, a rare disease company committed to improving the lives of rare disease patients by providing solutions to pharmaceutical partners that accelerate the development of orphan drugs, will be hosting a two day rare disease event at its headquarters in Rostock, Germany. The event on 20 - 21 Feb. 2019 will bring together industry, patient advocacy groups, and academia to discuss ways to collaborate in order to drive new treatments for the over 350 million people worldwide who are living with rare genetic disorders.

“We see a real need to accelerate the development of new therapies for patients living with rare disorders by bringing the best minds together to discuss the importance of interaction between patient advocacy groups and orphan drug companies,” said Prof. Arndt Rolfs, CEO of CENTOGENE. “Our objective is to analyse patients expectations, legal limitations, and compliance elements to improve the collaboration in order to accelerate the discovery and development of orphan drugs.”

The event will feature a line-up of speakers including:

  • Prof. Ari Zimran, a leader in clinical trials for new treatments for Gaucher disease and Director of the Gaucher Clinic at Shaare Zedek Medical Center in Jerusalem, Israel
  • Dr. Richard Klein, a 40 year veteran of the FDA; Andra Stratton, co-founder and President of Lipodytrophy United
  • Jennifer McNary, a rare disease advocate
  • Taylor Kane, Founder & CEO of Remember the Girls;
  • Carrie and Robert Ostrea, co-founders of Little Miss Hannah Foundation
  • Monica Weldon, Founder and President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation.

<link>You can request an invitation to attend the event by emailing <link>