In recognition of Rare Disease Day, Rocket Pharmaceuticals Inc., in collaboration with the Alexandria Center for Life Science, hosted its first Rare Disease Day NYC event at the Alexandria Center for Life Science on Thursday, February 28, 2019. This patient-centered event featured patients and families sharing their personal journeys with the NYC biotech community. Capping this moving event, where speakers shared stories of living with Fanconi anemia, Danon disease, X-linked agammaglobulinemia, and spinal muscular atrophy, was the lighting of the Empire State Building in the colors commemorating Rare Disease Day.
Previous
Next
Rare Disease Day 2019 Video Presentation
Welcoming Remarks Part 1 Gaurav Shah, M.D., CEO of Rocket Pharma
Welcoming Remarks Part 2
Jenna Foger– SVP, Science & Technology, Alexandria Venture Investments/Alexandria Real Estate Equities
What is Rare Disease Day and why do we commemorate it? Part 1 Kinnari Patel, PharmD, MBA– COO & EVP, Development
What is Rare Disease Day and why do we commemorate it? Part 2 Gayatri Rao, MD, JD– VP, Regulatory Policy & Patient Advocacy
What is Rare Disease Day and why do we commemorate it? Part 3 Gayatri Rao, MD, JD– VP, Regulatory Policy & Patient Advocacy
Patient and Family Journeys Introduction Kinnari Patel, PharmD, MBA– COO & EVP, Development
Patient and Family Journeys Part 1 Adam Becker– A perspective on Fanconi Anemia
Patient and Family Journeys Part 2 Adam Becker– A perspective on Fanconi Anemia
Patient and Family Journeys Part 3 Adam Becker– A perspective on Fanconi Anemia
Patient and Family Journeys Part 4 Adam Becker– A perspective on Fanconi Anemia
Patient and Family Journeys Part 5 Adam Becker– A perspective on Fanconi Anemia
Patient and Family Journeys Part 1 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 2 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 3 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 4 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 5 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 6 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 7 John Boyle – a perspective on X-linked Agammaglobulinemia
Patient and Family Journeys Part 1 Kim Marincik – A perspective on Danon Disease
Patient and Family Journeys Part 2 Kim Marincik – A perspective on Danon Disease
Patient and Family Journeys Part 3 Kim Marincik – A perspective on Danon Disease
Patient and Family Journeys Part 4 Kim Marincik – A perspective on Danon Disease
Patient and Family Journeys Part 5 Kim Marincik – A perspective on Danon Disease
Patient and Family Journeys Part 6 Kim Marincik – A perspective on Danon Disease
Patient and Family Journeys Part 7 Kim Marincik – A perspective on Danon Disease
Introduction to Eddie Ndopu Kinnari Patel, PharmD, MBA– COO & EVP, Development
Eddie Ndopu A perspective on Spinal Muscular Atrophy (Recorded message)
Panel Discussion Part 1 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 2 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 3 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 4 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 5 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 6 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 7 Adam Becker, John Boyle, Kim Marincik, Andre Hessels
Panel Discussion Part 8 Adam Becker, John Boyle, Kim Marincik, Andre Hessels