SPEAKERS

Danae’ Bartke • October 3 • 8:00PM • Brattle Theater

Danae’ Bartke is an adult patient with Homocystnuria. She became involved in patient advocacy after experiencing her own health issues and saw the importance and critical need first hand. She is currently President of the PKU Organization of Illinois and Executive Director of HCU Network American emerging non profit patient group to support people with homocystinuria and their care givers.

Janis Creedon • October 2 • 3:30PM • 500 Kendall Street • Sanofi Genzyme • First Floor

Janis Creedon is the mother of five-year-old Luke Creedon, who has an undiagnosed genetic disorder, believed to be like a connective tissue disorder. While Janis is employed as a psychiatric nurse, her full-time job revolves around caring and advocating for Luke. She plays an active, ongoing role in the following organizations: Rare Disease United Association, US Chapter; Mass Bio; NORD (National Organization for Rare Disorders). She also participates in many other advocacy activities locally and nationally. Janis has spoken at many rare disease conferences and gatherings, including in Cambridge BioMarketing’s Rare in Common documentary, at MassBio’s Rare Disease Day event, Beyond the Diagnosis, a traveling art exhibit of pieces that depict children with rare diseases, and at the South Shore Hospital for their Outpatient Pediatric Health Department.

Sam Falsetti • October 2 • 3:30PM • 500 Kendall Street • SanoFI Genzyme • First Floor

Sam has more than a decade of drug development and commercialization experience in the pharmaceutical, academic, and biotech worlds. Prior to joining Cambridge BioMarketing (CB) he worked at the Publicis Groupe, where he led scientific strategy on multiple antiviral products as well as groundbreaking investigational oncology therapies. While in academic drug discovery, Sam was part of
a research team that developed and successfully licensed three oncology agents, including a first-in-class targeted oncology therapy currently in phase I clinical trials. Sam has helped develop the scientific and clinical strategies and narratives for at least a dozen rare diseases and orphan products. His expertise is complemented by the clinical department of PhDs and MDs that he and CB have cultivated. In addition to his work at CB, Sam is a member of a data monitoring committee for the NCI Community Clinical Oncology Program and has served as president of a chapter of the American Medical Writers Association.

Dekel Gelbman • October 3 • 3:00PM • Brattle Theater

As the founding CEO of FDNA, Mr. Dekel Gelbman
lead an early stage computer vision technology into an innovative digital health platform and database used by thousands of clinicians, researchers and labs globally in the evaluation of genetic and other rare disease patients. Working closely with dozens of start-up companies for over a decade, including innovative technological companies from a wide variety of fields, Mr. Gelbman brings extensive experience in business development, legal counseling, and regulatory compliance to his role.

Frank Glavin • October 3 • 8:00PM • Brattle Theater

Frank Glavin is CEO of Orphan Technologies, a Neopharm company focused on the research and development of innovative therapies. In addition, he is the Vice President of Neovii Biotech North America and a member of the Neovii Executive Management Committee. He oversees the group’s strategy, clinical and commercial development, and operations. Mr. Glavin joined the company in 2009 and brings 15+ years of drug and commercial development experience in both public and private companies to Neovii.

Michelle Hall • October 2 • 1:00PM • 500 Kendall Street • SanoFI Genzyme • First Floor

Michelle Hall was born with a severe form of EB. She is the subject of the film “This is Michelle” and works at EB Research Partnership, which works to treat and cure EB (Epidermolysis Bullosa) as quickly and efficiently as possible by partnering with non-pro t and for-pro t entities and individual donors, as well as with the EB and research communities.

Marjorie Stewart-Hart • October 3 • 2:00 PM • BRATTLE THEATER

Marjorie Stewart-Hart is the Head of US and R&D Patient Advocacy at Shire.  In her role, she and her team are responsible for championing engagement with advocacy organizations that support patient communities across Shire’s commercial and pipeline portfolio.   Prior to coming to Shire, Marjorie held leadership roles in Patient Advocacy,  Clinical Nurse Education and Patient Services at Biogen.  Marjorie’s dedication to patients is driven by the desire to give them a voice, a choice, and hope.  Marjorie lives in Holliston, MA with her wife Elaine and their 3 dogs who all enjoy road trips and kayaking.

Carl Mason • October 3 • 11:00 AM • Boston Convention Center October 3 • 8:00 PM • Brattle Theater

Carl Mason is a filmmaker based in Milton Keynes, England. His film ‘Imagine’ achieved viral success online to generate charity awareness, and was nominated for Best Film & Best Young Director at the National Student Film Festival as well as The Fighting Irish, which was in partnership with the NFTS and BFI. Recent projects such as ‘First Response’, a one-take genre bending short which is currently being screened at independent cinemas across Europe; which was selected for NFFTY 2017 and nominated for the IMDB New Filmmaker Award.

Juliet Moritz • October 3 • 6:00PM • Brattle Theater

Juliet Moritz has worked in clinical research for more than 25 years, joining Premier Research in 2016 to specialize in rare diseases, supporting the strategic development of products that address unmet medical needs associated with rare and orphan conditions. She recently created and stepped into the position of Executive Director, Patient Engagement at Premier Research, a role which allows her to marry her deep clinical development experience with her passion for patient centric research. Ms. Moritz holds a Master of Public Health degree from the Drexel University School of Public Health and a bachelor’s degree in biology from the University of Pennsylvania. She is currently pursuing her doctorate in bioethics through Albany Medical College and is in the process of completing the Stanford Professional Certificate in genetics and genomics.

Steph Palermo • October 2 • 2:30PM • 500 Kendall Street • Sanofi Genzyme • First Floor

Steph Palermo is an author, radio talk show host and motivational speaker. Steph was born with a rare disorder, Poland Syndrome. Steph raises awareness of the realities of life with a limb difference. She helps audiences understand that living with a rare disorder is more than a physical hardship. Steph brings to light the emotional journey that parallels medical treatment, coping mechanisms and caring for your loved one who is bearing the burden of a chronic condition.

Lisa Phelps • October 2 • 6:00PM • 500 Kendall Street • Sanofi Genzyme • First Floor

As the Director of Marketing and Community Relations, Lisa oversees NORD’s marketing, communications, and public relations strategies. She and her team work closely with advocates, organizations and other stakeholders on programs and campaigns that support rare disease awareness, education, and advocacy. Lisa also serves on the governing council of Rare Diseases International.

Alisa Shakarian • October 2 • 3:30PM • 500 Kendall Street • Sanofi Genzyme • First Floor

Alisa possesses over ten years of industry experience and oversees strategic direction for creative and collateral
on behalf of Cambridge BioMarketing and has become the go-to creative resource for conceptual thinking and campaign execution. She embodies an inclusive creative spirit that inspires others, encourages their best thinking, and helps advance creative staff to the next level of their careers. In 2016, Alisa directed Rare in Common, a film project organized by Cambridge BioMarketing to honor people facing the challenges of a rare disease. Driven by Shakarian’s vision and energy, the project represents a collaborative effort among rare families, advocacy groups, vendors, and the agency.

Bill Sibold • October 2 • Noon • Sanofi Genzyme • First Floor

Bill Sibold is Executive Vice President and Head of Sanofi Genzyme, the specialty care global business unit of Sanofi. In this role, he is a member of the Sanofi Executive Committee. Previously, Bill was the Global Head of Sanofi Genzyme’s Multiple Sclerosis, Oncology and Immunology franchises, and led the preparation for the launches of two important new immunology treatments. Bill joined Sanofi Genzyme in 2011 as Senior Vice President and Head of Multiple Sclerosis, and oversaw the successful launches of its two MS treatments. As Head of Sanofi Genzyme, he leads the business’s efforts to maintain its leadership in rare diseases while continuing to grow in multiple sclerosis, oncology and immunology.

Mike Walsh • October 3 • 8:00PM • Brattle Theater

Michael Walsh is President and CEO of Patient Advocacy Strategies, a strategic consulting organization to Life Science companies and supports both non-profit
and for-profit clients through innovative and efficient collaborations with patient, professional and consumer groups around the world. Mr. Walsh has spent his entire career of 21 years in the Life Sciences industry serving in a multitude of roles. He has held Patient and Key Opinion Leader Advocacy leadership roles across a number of disease areas at MedImmune, Biogen, InterMune and Genentech. www.patientadvocacystrategies. com

Patricia Weltin • October 3 • 11:00AM • Boston Convention Center

Patricia Weltin is the CEO and Founder of the Rare Disease United Foundation. RDUF works on the challenges facing rare disease patients at a state-level and nationally. As a rare disease mom with a background in Finance, Patricia started working in the rare disease space to help raise awareness for all people living with a rare disease. Patricia and her team are innovators in the rare disease space and have used their own rare disease journeys to positively affect change.