Shira Strongin

Driven research fellow and graduate student with a passion for rare disease research, patient centered outcomes, and translational science. Experienced working within the government building partnerships externally and internally. Brings a unique perspective by using personal experience as a patient to inform professional work.

• Representing the CURE ID NCATS team during a Long COVID Families Q&A webinar at the end of April 2024
• Keynote speaker on "The Patient Perspective" at the first International Drug Repurposing (iDR) conference in Barcelona, Spain in March 2024
• Co-first author on "Identifying cohesion of barriers and viewpoints across different stakeholders in drug repurposing" poster which was presented at the first iDR conference in Barcelona, Spain in March 2024
• Co-first author on "Identifying cohesion of barriers and viewpoints across different stakeholders in drug repurposing for rare diseases" poster which was presented at the NIH's 2024 Rare Disease Day event
• First author on "Repurposing in the RASopathies" poster which was presented at the CDRC Annual Meeting in April 2023
• Presented on behalf of the FDA at the Oral History in the Mid-Atlantic Region (OHMAR) conference in March 2023 about the Rare Disease Patient and Caregiver Video Project
• Co-emceed FDA's Rare Disease Day 2023, which had 6,000 registrants
• Participated in the FDA Rare Disease Day coordinating committees for 2022 and 2023
• Participated in the OOPD Rare Disease Patient and Caregiver Video Project
• Honored as one of one hundred young changemakers in the latest installment in the Rebel Girls series, Goodnight Stories for Rebel Girls 100 Young Changemakers
• Presented about drug repurposing on behalf of the FDA at the BIO conference in June 2022
• Presented at a joint FDA/NCATS drug repurposing conference in 2019 in the role of an FDA intern as well as rare disease patient
• Peer educator, Vice President of Education, and President of GW Students Against Sexual Assault (SASA). Created educational content on prevention and resources, presented the content, supported survivors through the reporting process both to external MPD and internal Title IX. Received campus awards for organizational impact.
• Developed a still thriving young adult advocacy program with the EveryLife Foundation. Created and presented curriculum for training program on both state and federal advocacy, facilitated break out groups, and moderated panels with guests from Capitol Hill as speakers.
• Collaborated with House Committee on Energy and Commerce to create materials advocating for 21st Century Cures including organizing cyber rallies using #CURESNow for patient engagement.
• Founded Sick Chicks, an organization dedicated to uniting and empowering women with various illnesses and disabilities. Facilitate in-person and virtual events, moderate virtual support groups, delegate to leaders who run local chapters, and edit writing submissions for spotlight stories.
• Organized a Sisterhood and Sexuality Summit (2018) through Sick Chicks with panels on reproductive care and healthy relationships including Instagram influencer Caleigh Haber-Takayama (@fight2breathe) and award winning genetic counselor Margaret Au of Cedars-Sinai Hospital. Had 60 attendees present.

• Diller Teen Tikkun Olam grant recipient (2017)
• RareVoice Award - Teen Advocacy at the Federal Level (2017)
• Amelia Moore Sparkle Award for Compassionate Advocacy (2016)
• Global Genes RARE Champion of Hope Award - Teen Advocate (2016)

• Harvard HMX Pro Certificates in Pharmacology and Gene Therapy - in progress to be completed by June 2024
• cBio Portal Data Curator Certificate - in progress to be completed by May 2024
• NCATS AIM Program Certificate
• Codefinity Certificates in Multiple Levels of Python Courses - 2023
• Codefinity Certificates in Basic R Courses - 2023
• Harvard HMX Fundamentals Certificate in Biochemistry - 2023
• Harvard HMX Fundamentals Certificate in Immunology - 2023
• Harvard HMX Fundamentals Certificate in Genetics - 2023
• CITI HIPPA and Human Subjects Certificate - 2023
• CITI Biomedical Responsible Conduct of Research Certificate - 2022
• First Aid and CPR Certified - 2022