About Rare Medical Affairs (RMA)

I share your passion for improving the lives of people with rare diseases.

Download Joe’s CV.

A message from Joe Giuliano, Managing Director

At Rare Medical Affairs (RMA), we are focused on helping you and your team build, structure, change, and innovate the medical affairs function. Our approach is to partner with you to understand your goals and aspirations, and provide patient-centered solutions to solve the important challenges facing rare disease medical affairs teams.

Based on our experience and expertise, we concentrate on rare disease registries, building your organizational capabilities, evidence generation planning, engagement excellence, and launch planning. Let’s work together to improve outcomes for people living with rare diseases.

OUR VISION

We envision a world where people with rare diseases live well and live free.

OUR MISSION

  • We partner with our clients to understand their values and aspirations.

  • We leverage our expertise to solve some of the most difficult challenges in rare disease medical affairs.

  • We are passionate about our work and approach our mission with a sense of urgency.

  • We do this to improve outcomes for patients and to help our clients and their teams excel.

Let’s talk about how we can work together to improve outcomes for people living with rare diseases.

Our Experience

Joe has 32 years of experience in academic medicine and the pharmaceutical/biotech industry working in a variety of development and medical affairs roles. Half of his career was spent working in medical affairs on rare genetic diseases, including rare neurologic, neuromuscular, and metabolic disorders. 

In addition, Joe has specialized experience in rare disease registries. 

He 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, he was instrumental in the planning, development, and execution of the Enroll-HD platform, one of the largest global rare disease registries. He also developed and led 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, and

  • Patient reported outcomes and QOL data for payers.

Medical Affairs Experience

Joe held multiple roles in medical operations and served as Global Medical Director and Vice President of Global Medical Affairs. His responsibilities and accomplishments span the breadth of medical affairs and include:

  • Led major rare disease launches.

  • Successfully used AI/ML to improve rare disease diagnosis and prediction of treatment outcomes.

  • Led publication and scientific communication functions with integrated multi-channel distribution of content.

  • Led the roll out of enterprise digital capabilities. (Websites, publication extenders, webinars, podcasts, etc.)

  • Delivered Integrated Evidence Generation planning across multiple therapy areas.

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

  • Built and led global teams in delivering medical capabilities. (IIS, CME/IME, Congress planning, RWE, Phase 4 programs, Medical Information) 

  • Built field teams with focus on engagement excellence and healthcare ecosystem.

Let’s talk about how we can work together to improve outcomes for people living with rare diseases.