Applying knowledge to solve real-world challenges.

Joe Giuliano, Managing Director and Lead Consultant

Expertise does not only mean possessing a high level of knowledge and skill in a specific area, it also refers to a depth of understanding and the ability to apply knowledge to effectively solve real-world challenges.

I have 32 years of experience in academic medicine and the pharmaceutical/biotech industry working in a variety of development and medical affairs roles. 

I’ve spent the last 16 years working in medical affairs on rare genetic diseases, including rare neurologic, neuromuscular, and metabolic disorders. I originally trained as a nurse and spent 8 years caring for oncology patients. I held a senior staff roles in the Division of Pediatric Neurology at Johns Hopkins working with researchers, patients and families in pediatric movement disorders.

I have specialized experience in rare disease registries... 

From 2010—2021, I was on the faculty of the Rare Disease Registry Summer School, part of the European Joint Project on Rare Diseases in Rome, Italy. As Scientific Director I was instrumental in the planning, development, and execution of the Enroll-HD platform, one of the largest global rare disease registries.

I developed and lead rare disease registry initiatives while working in biopharma. These registries delivered:

• Post approval safety data for regulatory agencies

• RWD in support of long term efficacy

• Patient reported outcomes and QOL data as value drivers for payers

• New technologies to support data federation models for data sharing across registries.

... and medical affairs

I have held roles in medical operations and served as a medical director and as Vice President of Global Medical Affairs. My responsibilities and accomplishments span the breadth of medical affairs.

• Lead major rare disease launches

• Successful use of AI/ML to improve rare disease diagnosis and prediction of treatment outcomes

• Lead publication and scientific communication functions with integrated omni-channel distribution of content

• Lead the roll out of enterprise digital capabilities (websites, publication extenders, webinars, etc.)

• Deliver Integrated Evidence Generation planning across multiple therapy areas

• Build comprehensive Medical Governance systems (Research Review and Oversight, SOPs, Medical Quality and Compliance, etc.)

• Build and lead global teams for the delivery of medical capabilities (IIS, CME/IME, Congress planning, RWE, Phase 4 programs, Medical Information) 

• Build field teams with focus and engagement excellence and healthcare ecosystem focus

I bring my passion for rare diseases and improving the lives of people with rare diseases and their caregivers to Rare Medical Affairs. I am excited to partner with rare disease medical affairs teams in their quest to bring innovative medicines to patients.

Let’s talk about your needs and aspirations and how my experience and expertise can help you achieve your goals.