Rare Cancer Coalition Webinar: Building Relationships Between Patient Advocacy Groups and Pharma

Rare Cancer Coalition Webinar: Building Relationships Between Patient Advocacy Groups and Pharma

On Tuesday, April 28, Julie Breneiser, the Executive Director of the Gorlin Syndrome Alliance will be a presenter in a NORD webinar with Camilla Krogh Lauritzen, Chief Patient Officer of LEO Pharma.

If you are interested in watching, you can register via the link HERE. Insert the “Gorlin Syndrome Alliance” as the Company Name.

About this event:

This NORD webinar will provide our Rare Cancer Coalition and NORD’s Corporate Council with tips for forming lasting and effective relationships between patient advocacy groups and industry. The event will demonstrate a case study for what is possible when rare cancer patient advocates build a strong relationship with industry, and when industry includes the patient voice in planning and development. 


Julie Breneiser, Executive Director, Gorlin Syndrome Alliance, and Camilla Krogh Lauritzen, MSc, MCC, MMBA. Chief Patient Officer, LEO Pharma, will discuss their experiences building a strong and committed relationship with a patient mission in mind. During this webinar, we will review the importance of corporate understanding and respect for the patient voice and unmet needs. We will also address how a rare disease patient advocacy group can best position itself to work with pharmaceutical companies.