Global Genes™ Appoints New COO, VP of Patient Advocacy and VP of Strategic Alliances

April 20, 2015

Global Genes™, a leading non-profit rare disease patient advocacy group, today announced that three new hires have joined the company’s strategic executive team. Angie Rowe has been appointed the organization’s Chief Operating Officer, Kym Kilbourne, Vice President of Patient Advocacy and Barbara Lavery, Vice President of Strategic Alliances.

“Global Genes has seen tremendous growth over the last few years. We knew we needed to identify and hire the next leaders of our organization to continue with that growth,” commented Global Genes Founder and CEO, Nicole Boice. “These three powerful women come to us with an amazing level of expertise in specialized areas that will help us continue to be the impactful organization that the rare disease community deserves.”

Angie Rowe joins the Global Genes team as Chief Operating Officer with over 17 years of experience in executive management of LLCs and non-profits, most recently with the U.S. Bank OC Marathon and related event, Kids Run the OC. In addition, she has served on various non-profit boards and assisted several in their start-up phases. Rowe is a breast cancer survivor, enhancing her excitement about joining Global Genes with a personal connection to the value of an accurate genetic diagnosis. In her new role at Global Genes, Rowe will be primarily responsible for development of the financial management strategy, management and development of staff and contribute to the development of the organization’s strategic goals.

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VP of Patient Advocacy, Kym Kilbourne, has been an expert in government affairs, communications and patient advocacy for over 20 years.  She developed a deep passion for patient advocacy through her work with biopharmaceutical companies and leading trade associations.  She has developed successful federal policies to enhance patient access, designed collaborative advocacy approaches and created government outreach strategies in support of business and policy objectives. Previously, Kilbourne has focused on preserving patient access to life-saving rare disease therapies and led strategic federal advocacy, patient groups and aligned organizations. In her new role at Global Genes, Kilbourne will strengthen and lead the organization’s patient advocacy function by helping facilitate critical connections, and by up leveling educational resources and programming offered to the rare community. She will also lead Global Genes’ RARE Foundation Alliance™ initiatives in order to support and enhance the ability for patients to become successful advocates and activists for their rare disease.

New VP of Strategic Alliances, Barbara Lavery, has worked in life science communications for over 18 years. She built Zoomedia to be a leading life science interactive agency, which was acquired in 2014 to become HDMZ. Lavery has spearheaded projects with Gilead Sciences, ARIAD, Regeneron, InterMune, Seattle Genetics, Medtronic, the Avon Foundation/Army of Women, FasterCures and the Epilepsy Therapy Project. In her new role at Global Genes, Lavery will lead new business development and all strategic alliance efforts including strategic planning, guidance, and sponsor account supervision. Additionally, Lavery will take a leadership role in Global Genes’ RARE Corporate Alliance™ which aims to leverage the resources and capabilities of industry and patient communities to improve heath and expedite access to effective therapies for all patients with rare diseases. Lavery served on the board of Global Genes prior to her new role with the company.


Rowe and Lavery will be based in the Global Genes Aliso Viejo, California office while Kilbourne will be based remotely in Washington D.C. For more information on Global Genes and to get involved in the rare disease community please visit




About Global Genes™

Global Genes is a non-profit organization that operates as one of the leading rare disease patient advocacy groups in the world. Global Genes promotes the needs of the Rare Disease Community under a unifying symbol of hope—the Blue Denim Genes Ribbon™. The organization was born out of humble beginnings, emerging as a grassroots movement in 2009 comprised of a handful of rare disease parent advocates and foundations. The movement has since grown to over 500 global organizations that strive to eliminate the challenges of rare disease, by building awareness and providing critical connections and resources to positively impact affected patients and families.

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