|Associate Director, US Patient Advocacy
Year joined PA group: 2007
Year joined Genzyme: 1997
I am responsible for U.S. Patient Advocacy which means working with the many rare disease patient organizations, both large, small, well established and those just beginning! My typical activities and responsibilities are prioritizing issues and challenges on a daily basis and working together with the team to try to resolve them. Examples include communication, program planning, and managing the grant process for all the US patient organizations.
I have a Master’s Degree in Social Work (LICSW) and have worked in hospitals and health care my whole professional career. My first position was with OB/Gyn patients, particularly high risk and teenage pregnancies at the University of Washington Hospital in Seattle Washington. Then, I moved to Boston and worked for 11 years at the Tufts New England Medical Center with patients and families affected by Cystic Fibrosis. Using my social work skills and background, I then became a case manager at Genzyme working directly with Gaucher, Fabry, MPS and Pompe patients. Ultimately I became a manager for the Patient and Product Services group before transitioning to Genzyme Patient Advocacy.
My background working directly with patients in hospital settings and then as a case manager at Genzyme helped me evolve into my job in Patient Advocacy. I work less often directly with patients and, instead, with patient organizations, but, I hope that the impact is the same, if not greater. The Genzyme culture is dedicated to holding our relationships with patients and patient organizations as one of our most important values. Being a part of that culture is a great honor.
When I talk to family, friends and other colleagues about my job at Genzyme, the usuaI response I hear is: “you’re the perfect person for that job”. I feel very lucky to be in this position!
|Manager, Patient Group Relations Europe
Year joined PA group: 2012
Year joined Genzyme: 1995
Together with Annamarie Dillon, I am responsible for Patient Advocacy activities within the European region. My main focus will be on Gaucher disease and working with the Gaucher community, as well as supporting patient advocacy initiatives for the rare disease communities we partner with across Europe.
Genzyme is my first employer. Before working here I studied Marketing, Economics and Languages in Amsterdam. I joined in 1995 as Customer Service representative, during which time I had the pleasure to liaise directly with Gaucher patients, caregivers and hospitals to make sure that patients got their treatment in time. After five years I moved into a European Marketing role for both Gaucher and Fabry disease, when I had the opportunity to engage with physicians and patient organizations and really began to appreciate the value of the power of collaboration between all stakeholders in the rare disease space. Following an internal reorganization, I spent about a year with the Meeting and Events department, and most recently transitioned to the Patient Advocacy team – so even though I am the longest serving Genzyme employee on the team, I am the newest recruit!
After 17 years I am still impressed with Genzyme’s commitment to patients, which I have witnessed throughout my career. The shared sense of urgency of doing what is right for the patient communities we work with has always kept us focused on what matters most. In my new role I have a unique opportunity and responsibility to make a significant contribution. Sharing the patient perspective and highlighting the needs of the community within our organisation, and partnering externally with patient organisations on common goals is key to our success.
Being from an Italian background, I love to cook and spend time with my closest friends and family. Some day in the future I hope to move to a nice country house somewhere in Toscany!
|Associate Director, Patient Group Relations Europe
Year joined PA group: 2008
Year joined Genzyme: 2005
I am based at Genzyme’s European regional offices in Naarden, The Netherlands. In my role, I am focused on Genzyme’s commitment to support the rare disease patient communities we serve and enhance the patient-focused culture of Genzyme in Europe, by integrating an understanding of the needs of patient communities with the goals and objectives of our colleagues.
I joined Genzyme in 2005 and subsequently held positions of increasing responsibility within the Global Marketing team for Pompe disease in Europe. During this time I had the privilege to interact and collaborate with the neuromuscular and Pompe communities, and in 2008 I was offered the opportunity of an internship within the Patient Advocacy team and haven’t left since! Before joining Genzyme, I worked worked at Eurodrug Laboratories in various marketing roles for 5 years and have a Masters in science from University College Cork, Ireland.
Being part of the Patient Advocacy team at Genzyme means I work alongside committed individuals every day, whether they be my colleagues or representatives of patient groups, we all have a shared mission to do what’s best for the patient communities we support. I believe that by partnering together, we can achieve more and develop a deeper understanding of each other’s perspectives and needs.
One day I hope to experience the wonder of the Aurora Borealis.
|Director, Advocacy Development - Cardiovascular
Year joined PA group: 2010
Year joined Genzyme: 2006
I am responsible for global FH Patient Advocacy and related disease awareness initiatives for the cardiovascular program. This means supporting FH patients here in the US as they organize and build The FH Foundation and supporting FH patient organizations globally. I also work with various organizations to support disease awareness initiatives within their membership. My typical activities and responsibilities include meeting US FH patients through their physician and connecting them to other FH patients, working with identified FH patients to help them tell their stories, prioritizing opportunities to increase FH disease awareness, encouraging and supporting my Genzyme country partners around the globe as they conduct patient advocacy and disease awareness activities in their own countries.
I have been in the pharmaceutical industry for over 20 years in a number of different roles. I started out in sales and later moved into specialty sales where I worked with thyroid cancer patients. I later held roles in sales training, marketing and district management. In early 2000, my wife was diagnosed and treated for thyroid cancer and began getting involved with a thyroid cancer patient community. I would have never guessed that my previous work with thyroid cancer patients would hit that close to home. It was through this experience that I became aware, first hand, in the power of patient advocacy and where my passion for advocating for patients with rare disorders was born and is lived out in my work with FH patients today.
I firmly believe that the work I am doing today to support the FH community is not only having a positive impact on the lives of the patients that I am working with today, but is going to improve the lives of FH patients for generations to come. In my mind, I do not work for Genzyme. Instead, I am working everyday for the little faces pictured on the holiday cards that I receive from the FH patients that I work with and the many others just like them.
I am driven everyday to give 121% of myself to my work and my family but where I find the greatest relaxation is in my yard. It is a great day when I am able to get a little dirt underneath my fingernails and savor the smell of fresh cut grass.
|Associate Director, Global Patient Advocacy
Year joined PA group: 2010
Year joined Genzyme: 2010
I am part of Genzyme’s global patient advocacy team, which means I work primarily with patient organizations in the Asia-Pacific region, Latin America and Canada. In my work, I seek to understand the needs and challenges of the patient community as well as enhance the patient-focused culture of Genzyme. As a relatively new member of the team, I’m looking forward to using my experience in policy, public health and non-profit development to support the work of our partner organizations.
I worked for almost 20 years in the non-profit sector, primarily in organizations that focused on public health, democratic development and women’s empowerment programs in developing countries. While at the National Democratic Institute for International Affairs, I worked in West Africa and Latin America to support local efforts to bring about democratic reform. Upon receiving my master’s degree at Harvard University’s Kennedy School of Government in 2000, I joined Pathfinder International, a large non-profit organization dedicated to improving maternal and child health, HIV/AIDS prevention and family planning programs in developing countries. During my nine years at Pathfinder, I gained a tremendous respect and appreciation for the role of patients as advocates and for the power of individual stories to mobilize vast resources, improve public policy and transform programs.
To me, patient advocacy is about the power of partnership and working with some amazing people towards a common goal. It means understanding the journey of our patient community and turning that into a vision that can mobilize people and resources on their behalf. It is an honor to work on behalf of the people we serve.
I love this quote by Albert Einstein - “There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” It reminds me to be grateful for the everyday things in life.
|Manager, US Patient Advocacy
Year joined PA group: 2011
Year joined Genzyme: 2000
I am the newest member of the Patient Advocacy group and report into Kathleen Coolidge. Together we are responsible for patient advocacy for the US. We work primarily on Gaucher, Fabry, Pompe, and MPS I. In working with patient organizations we need to understand how best to support them and help them be successful. We also need to support not only organizations, but individual patients when they come to us.
Previously I worked as a Manager in International Regulatory Affairs, acting as the primary liaison with our Genzyme Japan office. I supported other countries/regions at different times, including China, Korea, Taiwan, North Africa and the Middle East. I loved working with our Japan office in particular, as I lived in Japan and speak Japanese. In past lives I have worked as a carpenter, teacher, ski patrol and many others!
I feel so fortunate to have an opportunity to work in the Patient Advocacy group. I am proud of the work I did in Regulatory Affairs, and I know the work directly led to making therapies available to our patients, but it was very theoretical in that regard. Now in just a short time I have already had multiple opportunities to speak directly with the people who are most important to us as Genzyme employees – patients. It is then incumbent upon me to share the perspective we gain from working with patients internally with our Genzyme colleagues so that keeping patient’s needs is foremost in people’s minds when they go about their daily work.
I love hiking, rock climbing and mountaineering. My favorite quote is from Scottish mountaineer and writer William Hutchinson Murray: “Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then providence moves too. A whole stream of events issues from the decision, raising in one's favor all manner of unforeseen incidents, meetings and material assistance, which no man could have dreamt would have come his way. I learned a deep respect for one of Goethe's couplets: Whatever you can do or dream you can, begin it. Boldness has genius, power and magic in it!”
|Senior Director, Global Patient Advocacy
Year joined PA group: 2005
Year joined Genzyme: 2005
I am responsible for managing the activities of Genzyme’s Global Rare Diseases patient advocacy activities and our global team’s efforts across different disease communities in the rare disease space.
I started my career working for a biotechnology company in the Boston area supporting the Multiple Sclerosis community as a case manager. After earning my Masters in Public Health from Boston University, I spent time in the non-profit field at the ALS Therapy Development Institute. It was here that I really learned about the role of patients as advocates and gained first- hand experience working within a non-profit organization. What I learned while working with the ALS community helped to shape the values and principles that I try to bring to my daily work at Genzyme.
To me, patient advocacy at Genzyme means several things. First and foremost, it’s ensuring that the larger patient community feels they have an internal champion to help raise their concerns within Genzyme. We strive to cultivate positive, mutually beneficial working relationships with advocacy groups worldwide to help better serve the rare disease communities we support. Lastly, we work to aid our colleagues across the organization to feel connected to the journeys of those affected by rare diseases. I believe that Genzyme’s investment in a global advocacy team of this size is indicative of how the company views advocacy as a whole- a critical part of both Genzyme’s history and future.
My favorite quote is from the well-known anthropologist, Margaret Mead. "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."
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