Sofia Balog

Experience

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  SMASH

  Jun 2011 - Jul 2012

  Account Assistant

  www.smashbtl.com360 Communication Agency Recognition: Smash of Gold 2011 - Team player of the yearEvent planning and onsite work at corporate events.Responsible for the selection and supervision of events at the VIP sector of a bankOne on One Marketing in target places and Experience Marketing

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  TRAMA GLOBAL

  Aug 2012 - Oct 2014

  Account Assistant - Events Assistant

  www.tramaglobal.comAs Account and Events assistant I was in charge of:Bidding process coordination and providers research.Assist to event planner at corporate exclusive and massive events. Evaluations and brief presentations for clients. Management of promotion of sales at target locations.Creation of proposal presentations for new clients.

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  Fundación Enhué

  Sept 2013 - Dec 2015

  Program Coordinator

  Created in 2010, Enhué was established to help raise awareness of rare diseases.Mission: Promote a better quality of life for people with rare diseases.As Programs Coordinator, I worked on:Program design, planning and management.Coordination of the Patient Support team.Campaigns for health awareness.Organization of medical events and meetings for families.Budget Analysis and Evaluation. Strategy development.Fundraising and donor grants. Internal and external communications. Institutional relations and agreements with other organizations. Show less

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  AbilityPath

  May 2016 - Feb 2017

  Recreation Specialist - Family support services
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  New York Restoration Project

  Jun 2017 - Nov 2018

  Community Engagement Assistant

  New York Restoration Project (NYRP) is a non-profit organization driven by the conviction that nature is a fundamental right of every New Yorker. Founded in 1995 by Bette Midler, NYRP has planted trees, renovated gardens, restored parks, and transformed neighborhoods into communities.Community Engagement, Social Sustainability, Partnerships, Public Events. Recognition/Award: Outstanding Service NYRP 2017

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  Cancer Research Institute (CRI)

  Apr 2019 - Jul 2020

  Project Coordinator - Immunotherapy Patient Summits

  As project coordinator, I worked closely with the Director of Patient Engagement organizing the CRI Immunotherapy Patient Summit Series; free educational events that gather experts, patients, and advocates, hosted in leading cancer centers around the US, including NYU (NY), Johns Hopkins (Baltimore), and MD Anderson (Houston).I maintained and coordinated over 85 national and local educational partnerships with national cancer organizations, cancer centers, and patient support groups. Managed the ImmunoCommunity, an online community for patients and caregivers.https://www.cancerresearch.org/blog/authors/sofia-balog Show less

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  Association for Creatine Deficiencies

  Oct 2020 - Nov 2021

  Patient Registry Coordinator / Community Engagement

  As study coordinator, I worked to define and augment the patient registry data dictionary of the CreatineInfo registry for Creatine Deficiencies in collaboration with the National Organization for Rare Diseases (NORD), researchers, academics, and the patient and caregiver community, using a partnership-based research approach.Responsible for-The registry development from its initial research stage, design, survey development, protocol, to its implementation and maintenance. Reports, presentations, and data summaries.-Regulatory requirements: R&D and IRB applications, study protocol, including informed consent, safety, and data security requirements.- Coordination of the Registry Advisory Board: Scientific Medical Advisory Board and the Patient Advisory Board.- Study enrollment and engagement Additionally, I worked on:- Community engagement at the Global Ambassadors’ Program - Grant Project Management - One PCORI grant awarded ($238,000 to engage families in research to develop a core outcome set for future clinical trials)- Served as Co-chair at the Chan Zuckerberg Initiative - Rare As One Network Natural History / Patient-reported Outcomes Databases Workstream, with the mission of increasing collaboration between Rare Diseases Organizations and addressing challenges around Patient registries.For more information about Cerebral Creatine Deficiency Syndromes and the Association for Creatine Deficiencies visit www.creatineinfo.org. Show less

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  Cancer Research Institute (CRI)

  Aug 2021 - Nov 2021

  Community Engagement Consultant

  Patient Engagement, strategic and educational alliances with associations of the Hispanic community in the United States at Cancer Research Institute (CRI) first Virtual Immunotherapy Patient Summit.Served as a liaison for worldwide patients looking for trustworthy information about immunotherapy and clinical trials and provided support and advice on the Diversity, Equity, and Inclusion (DEI) plan of its 2021/2022 programs.

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  Ultragenyx

  Dec 2021 - now

  • Patient Advocacy Manager, LATAM

    Jan 2023 - now

  • Patient Advocacy Specialist LATAM

    Dec 2021 - Dec 2022