Courtney Firak - Consultant - Project Based,

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Work Background

Firak Consulting GroupPrincipal Consultant

Apr. 2023Patient Inclusive Strategies Through Lived Experience.

Spark Therapeutics, Inc.Patient Advocacy Lead, Ophthalmology

Jun. 2021 - Mar. 2023Created and executed Spark’s strategic patient engagement and educational outreach plan for inherited retinal disease (IRD) and low vision patient advocacy organizations at the national, regional, and local level. Responsible for generating and implementing actionable insights from the IRD and low vision community to inform patient advocacy initiatives, programs and events across the continuum of drug development. Drove strategic planning and leveraged expertise to advise, influence and lead colleagues to integrated patient engagement. Developed and managed the ophthalmology patient advocacy budget and executed logistics of sponsorships and charitable donations to the ophthalmology patient organizations. Key Accomplishments ● Developed accessible and inclusive presentations, educational materials and patient resources that aimed to address gaps in knowledge about genetic components of blinding disorders, the value of genetic testing and gene therapy education. ● Patient advisory board development, execution and inclusion of insights into brand plan. ● Championed the voice of the low vision and blind community internally and increased awareness of specific accessibility challenges of this community. Efforts directly led to updating of corporate websites and other internal and external assets to align with accessibility needs.

Kidney Cancer AssociationSenior Director, Programs & Partnerships

Jan. 2020 - Jun. 2021Strategic development of education and support programs for patients, caregivers, and healthcare professionals including the planning, implementation, promotion, and evaluation of each program with input from the kidney cancer community. Cultivated relationships with stakeholders including pharma, biopharma, patient advocacy groups, healthcare tech companies, and other important partners with an interest in kidney cancer. Managed an annual program budget of over $1 million. Supported and coached a small programs team. Key Accomplishments ● Developed and implemented a successful corporate funding strategy that included symposium sponsorship and program support from commercial and clinical stage pharmaceutical companies that included over $1 million in revenue from sponsorship, program support, and symposium registration; a 25% increase over previous years. ● Modernized two established healthcare professional symposiums through the creation of an event website, vetting and hiring of a new event management partner, and pivoting to adapt to a virtual environment that led to the best attended symposium to date for the organization. ● Developed a pilot program to better understand the underserved within the kidney cancer community through patient insights and community surveys. Program was successfully funded through a $200k grant.

Continuum ClinicalDirector, Patient Advocacy

Nov. 2018 - Jan. 2020Developed and drove the strategic direction for the Patient Advocacy department to maximize patient inclusive clinical trial enrollment efforts across therapeutic areas.. My team worked to strengthen the overall understanding of the patient journey for every clinical trial program company-wide. Provided coaching, management and mentorship to a team of patient advocacy professionals. Developed and maintained strategic partnerships with patient advocacy groups and community organizations across therapeutic areas with a focus on autoimmune conditions, CNS disorders and rare diseases. Led business development efforts for Patient Advocacy with prospective clients and offered subject-matter expertise during strategy sessions, proposal development and client presentations. Managed all resourcing and forecasting efforts for new contracted work for the department. Developed well-grounded, innovative strategies to solve client challenges and maximize opportunities to meet clinical trial enrollment goals. Key Accomplishments ● Expanded the operational scope of the Patient Advocacy service offering with a focus on developing strategies to reach populations typically underrepresented in clinical trials. ● Built out the department section of Salesforce database including tracking and evaluating performance of advocacy tactics and developing internal and external report structure. ● Worked cross-functionally to develop and execute a sensitivity workshop for the company prior to beginning an HIV/AIDS clinical trial with a focus on intersectionality and the diverse communities who might enroll in this trial. ● Promoted multiple times throughout my tenure to eventually lead the Patient Advocacy department.

Continuum ClinicalAssociate Director, Patient Advocacy

May. 2018 - Nov. 2018Greater Chicago Area

Continuum ClinicalSenior Manager, Advocacy Relations

Jan. 2018 - May. 2018Greater Chicago Area

Continuum ClinicalManager, Advocacy Relations

Oct. 2016 - Dec. 2017Greater Chicago Area

Pulmonary Fibrosis FoundationDirector, Programs

Jan. 2015 - Oct. 2016Greater Chicago AreaDeveloped, managed, and provided strategic direction for all education and volunteer programs including the effective management of program plans, timelines, annual budgets, guidelines and policies, delivery of service and evaluation framework for each program. Ensured across the board growth in all program metrics as outlined in the strategic plan and created internal and external program evaluation reports for the Executive Team, Board of Directors, and funders. Supervised program team and organized department to increase overall productivity and efficiency. Managed extensive volunteer, funder, industry, healthcare provider and other stakeholder relationships. Served as the program liaison to pulmonary fibrosis community and external partners at national, regional, and local events and meetings. Developed and managed multiple multi-year program budgets and collaborated with the finance team to establish charts of accounts for each new program. Established and maintained the patient services’ global resource database including support group listings, physician referrals, current clinical trials, and other resources vital to constituents. Key Accomplishment ● Prepared funding proposals that secured multi-year sponsorships from multiple industry partners totaling $10+ million. ● Collaborated with the Executive Team and sponsors to establish three (3) new education and volunteer programs in four (4) months. ● Worked with internal and external stakeholders on the establishment of the PFF Registry and inaugural PFF Care Center Networks sites. ● Developed the Support Group Leader Network program which connected national and international support group leaders and provided capacity building support to leaders.

Pulmonary Fibrosis FoundationSupport Services Coordinator & Manager of Programs

Mar. 2012 - Jan. 2015Chicago, IL

John H. Stroger Hospital of Cook CountySocial Work Intern

Sep. 2010 - May. 2011Greater Chicago AreaAs a social work intern, I provided case management services by working collaboratively with patients, families, interdisciplinary clinical teams, external health organizations, and community resources in order to maximize patient care; established a systematized physician referral process within the General Medicine Clinic and implemented the creation of necessary forms in order to minimize patients’ wait time to receive services; counseled patients and families grieving the loss of a loved one through bereavement support phone calls and mailings, one-on-one sessions, and through co-facilitation of bi-monthly bereavement group.