Experience

Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

• United States
• Philanthropic Fundraising Services
• 1 - 100 Employee

• Director of Patient Programs/Patient Registry Coordinator

  • 2010 - Present

  United States As Director of Patient Programs primary role is advocate and first point of contact for patients with rare lymphatic anomalies of generalized lymphatic anomaly (GLA), formerly known as lymphangiomatosis, Gorham-Stout disease, kaposiform lymphangiomatosis (KLA), central conducting lymphatic anomaly (CCLA), and their families. Responsibilities include developing and providing patient education and resources, serving as patient database manager, creating educational content, serving as LGDA Clinic… Show more As Director of Patient Programs primary role is advocate and first point of contact for patients with rare lymphatic anomalies of generalized lymphatic anomaly (GLA), formerly known as lymphangiomatosis, Gorham-Stout disease, kaposiform lymphangiomatosis (KLA), central conducting lymphatic anomaly (CCLA), and their families. Responsibilities include developing and providing patient education and resources, serving as patient database manager, creating educational content, serving as LGDA Clinic Network Program Coordinator and coordinating clinical trial support. The Director is responsible for meeting operational goals and objectives within a defined budget, collaborating with other members of the LGDA organization, and reporting to the LGDA Board of Directors information relevant to the program. As Principal Investigator for the International LGDA Registry for Lymphatic Malformations, assume overall responsibility for coordinating and managing the ongoing operation of the registry. Show less



Invitae

• United States
• Biotechnology Research
• 700 & Above Employee

• Patient Insights Network Development, Implementation & Management

  • 2017 - 2018

  San Francisco Bay Area Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. Invitae’s Patient Insights Network (PIN) began in 2007 as PatientCrossroads. Over the years, the PIN team has developed and managed programs for more than 400 diseases and worked with more than 100 advocacy groups, the National Institutes of Health (NIH), Patient-Centered Outcomes Research Institute (PCORI)… Show more Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. Invitae’s Patient Insights Network (PIN) began in 2007 as PatientCrossroads. Over the years, the PIN team has developed and managed programs for more than 400 diseases and worked with more than 100 advocacy groups, the National Institutes of Health (NIH), Patient-Centered Outcomes Research Institute (PCORI), as well as biotech and pharmaceutical companies. Patient Insights Networks have reimagined the traditional patient registry to maximize the ability of patients to contribute and control their own data and amplify the impact that data can have for other patients, clinicians and researchers. Patient Insights Networks build powerful data sets of symptoms, history, diagnostic journey, quality of life and cost of living with serious health conditions. Patients, advocates, clinicians and researchers then have access to the de-identified data and research-ready patient communities to drive insights that can improve care, increase access to clinical trials and accelerate treatment development. Show less



AltaVoice

• India
• Consumer Services

• Patient Insights Network Development, Implementation & Management

  • Sep 2013 - Jan 2017

  San Mateo, CA AltaVoice (formerly PatientCrossroads) is a patient-centered data company in Silicon Valley with an innovative business model that amplifies the voice of patients to optimize the search for better treatments for diseases. We build and host Patient Insights Networks (PINs). More powerful than a traditional patient registry, a PIN is a highly efficient way to build engaged communities, raise disease awareness, recruit for clinical trials, educate, and follow patients during every stage of drug… Show more AltaVoice (formerly PatientCrossroads) is a patient-centered data company in Silicon Valley with an innovative business model that amplifies the voice of patients to optimize the search for better treatments for diseases. We build and host Patient Insights Networks (PINs). More powerful than a traditional patient registry, a PIN is a highly efficient way to build engaged communities, raise disease awareness, recruit for clinical trials, educate, and follow patients during every stage of drug development and commercialization. AltaVoice merged with Invitae in January 2017. Show less