Patients with rare diseases and their families often face years of uncertainty before receiving a diagnosis. This panel brings together parents, clinicians, and biotech leaders to explore how artificial intelligence is offering hope by reshaping rare disease discovery, diagnosis, and care. Through lived experiences and real-world examples, our panelists will discuss how AI can help shorten diagnostic journeys, support clinical decision-making, and unlock new treatment possibilities by connecting genomic insights to novel treatment strategies. The conversation will also examine the importance of human expertise, transparency, and trust in ensuring AI is used responsibly in rare disease care. Join us for a powerful conversation at the intersection of patient advocacy, clinical innovation, and biotechnology.

Note: Each ticket includes appetizers and two drink tickets.

Program

5:00 p.m. – 6:00 p.m.  Check-in and Networking
6:00 p.m. – 6:10 p.m.  WIB/Welcome Remarks
6:10 p.m. - 6:15 p.m.  Sponsor/Opening Remarks
6:15 p.m. – 7:00 p.m.  Panel Discussion
7:00 p.m. – 7:30 p.m.  Audience Q&A
7:30 p.m. – 8:30 p.m.  Post-panel Mingling

Speaker Bios

Aditi Chawla, Senior Staff Scientist at Illumina, Moderator

Aditi is a biotechnology scientist with deep expertise in genomics and rare‑disease variant interpretation, currently serving as a Senior Staff Scientist at Illumina. Her work integrates advanced AI tools, which enhance trust in genomic interpretation through transparent, evidence‑based explainable AI, to accelerate rare‑disease diagnosis. She also leads community wellbeing initiatives through breathwork and meditation.

Caroline Cheung-Yiu, Founder of Community of Undiagnosed Rare and Extraordinary (CURE) 

Caroline is the founder of the support group, Community of Undiagnosed Rare and Extraordinary (CURE). Connecting families lacking a diagnosis for their child. Empowering them with resources to forge ahead in their diagnostic odyssey. 12 years passed before Caroline’s son was diagnosed with the very rare neurodegenerative disease, IRF2BPL Disorder. Her family is part of an award-winning documentary film, Undiagnosed, that spotlights the struggles of undiagnosed patients and their families. Caroline has been advocating for the plight of undiagnosed patients and their families to healthcare professionals, research scientists, and the rare disease community through speaking at conferences and community engagements. She served on the Community Advisory Board at Simons Searchlight 2021-2023. Caroline strives to expand the awareness of IRF2BPL Disorder/NEDAMSS to the public.

Tamar Grossman, PhD, CEO at La Jolla Labs 

Tamar is the CEO and co-founder of La Jolla Labs, a biotechnology company focused on advancing RNA-based therapeutics to address rare and complex diseases. With a career spanning over two decades, she has developed extensive expertise in RNA therapeutics, gene therapy, and drug delivery modalities. Previously, Dr. Grossman served as the Vice President and Global Head of RNA, Gene Therapy, and Delivery at Johnson & Johnson, where she led global teams in delivering RNA-based, gene therapy, and ADC development candidates across therapeutic areas. Prior to her role at Johnson & Johnson, she was the Head of Rare Diseases at Arcturus Therapeutics, where she developed RNA therapeutics for rare and common disease. Earlier in her career, she held leadership positions at Ionis Pharmaceuticals, including Director of Translational Medicine. Dr. Grossman earned her PhD in biochemistry from Tel-Aviv University and completed her postdoctoral training at UCSD. Under her leadership, La Jolla Labs has transitioned from a technology-driven company to an RNA therapeutics-focused organization, leveraging AI and machine learning to accelerate drug discovery and address unmet medical needs

Kat Schmolly, MD, Resident Physician at UCLAHealth and Founder of zebraMD

Kat is a physician-scientist, technologist, and entrepreneur advancing new models of care for patients with rare and underdiagnosed conditions. Trained in internal medicine and medical genetics and genomics, her work focuses on closing diagnostic gaps in rare disease—particularly for patients whose presentations fall outside traditional clinical and research frameworks. Dr. Schmolly brings a nontraditional, cross-sector approach to rare disease, integrating clinical medicine, genomics, and health technology to translate discovery into real-world impact. She has contributed to academic efforts addressing atypical rare disease presentations and is actively building and advising technology-enabled solutions that embed genomic insight, AI-driven decision support, and longitudinal data into everyday clinical workflows. Her work emphasizes equity, scalability, and systems-level change—reimagining how rare disease is identified, studied, and treated across diverse populations.

Rachel Vanni, Founder and President of The Charlie Elenore Foundation

Rachel is the Founder and President of The Charlie Elenore Foundation, a nonprofit dedicated to improving access to treatment for individuals and families affected by rare diseases. She founded the organization in honor of her daughter, Charlie, after experiencing firsthand the challenges families face in securing specialized medication, financial support, and connecting with local resources. The foundation’s mission centers on removing barriers to treatment, whether through direct financial assistance, connecting patients with local support, or helping families identify relevant clinical trials. Its work is grounded in the belief that access to treatment should not depend on financial circumstance, geography, or ability to navigate a complex system alone. In addition to her nonprofit leadership, Rachel is a licensed attorney who works in biotech marketing strategy, partnering with life sciences organizations to translate complex science into clear, human-centered narratives that drive understanding, trust, and impact.

Meredith Wright, PhD, Director of Technology and Innovation at Rady Children’s Institute for Genomic Medicine

Dr. Meredith Wright is the Director of Technology and Innovation at Rady Children’s Institute for Genomic Medicine. Her work lies at the intersection of molecular genetics, data science and technology, and clinical implementation for rare disease research and diagnosis. Her role at Rady is to bring new genomic resources into clinical implementation for both rare disease diagnostic testing and scaling newborn screening by WGS. Meredith is a part of multiple working groups centered around technology, data science, and clinical feasibility with a focus on building scalable and equitable diagnostic and newborn sequencing platforms.

Pricing Information

• Members/Guests: $25
• Non-members*: $40

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Note: A confirmation email will be sent after registration has been completed. 

Maximum Capacity

75

Parking Information

Free parking is available in the surface lot or the covered garage, but not in the DoubleTree Hotel surface lot.

Accessibility Accommodations

The location is fully accessible to those with physical disabilities.