Join us for our 11th Annual Rare Disease Signature Event, a unique panel discussion featuring diverse perspectives on ultra-rare diseases. Hear a powerful patient and caregiver story, insights from a clinical geneticist advancing dedicated genetic screening programs to promote early identification of rare diseases in newborns, and cutting-edge research from a leading biotech company.

Ticket includes appetizers, desserts, and two drink tickets.

Program

5:00 p.m. – 6:00 p.m.  Check-in and Networking
6:00 p.m. – 6:15 p.m.  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

Sika Dunyoh, Senior Director, Patient Advocacy at Travere Therapeutics

Sika is a highly experienced professional in the field of rare disease patient advocacy. She has experience in patient engagement, patient education, health equity, DEI programming, and marketing. Her passion for advocacy was inspired by her sister Carolyn, who passed away from complications of an ultra-rare autoimmune disease called relapsing polychondritis in 2008. Sika is currently the Senior Director of Patient Advocacy at Travere Therapeutics and continues to use her personal experience to drive her work. Prior to Travere, Sika worked at the National Organization for Rare Disorders, overseeing and developing educational initiatives for patients and caregivers, medical professionals, and students pursuing careers in healthcare.

Laury Mignon, PhD, Executive Director of Clinical Development at n-Lorem Foundation

Laury has more than 20 years of experience as a seasoned academic researcher and clinical developer with a passion for rare diseases. At n-Lorem, she collaborates closely with physicians who have nominated patients who have nano-rare diseases and develops individualized treatment goals for each patient. Prior to n-Lorem, Laury worked at Ionis Pharmaceuticals in both the translational medicine group and the neurology franchise clinical development group. In those roles, she implemented a novel genomic study to understand genotype-phenotype associations and disease pathways better, initiated the first clinical study in myotonic dystrophy type 1, and was a key member of the clinical team that brought SPINRAZA® (nusinersen), a disease-modifying therapy for patients with spinal muscular atrophy, to the market. Prior to Ionis, Laury worked at Orexigen Therapeutics on the development of an obesity medication and at the Neuroscience Education Institute, developing Continuing Medical Education material aimed at deconstructing the mechanism of action of psychiatric medications for psychiatrists, primary care physicians, and registered nurses. Laury’s broad and diverse experience allows her to be strategically creative in her approach to dealing with uncharted challenges. Laury received her PhD in pharmacology and experimental therapeutics from Loyola University Chicago and was a researcher for six years in the Department of Neurology at UCLA in the laboratory of Marie-Françoise Chesselet, studying properties of muscle-derived stem cells and the role of the serotonin pathway in Parkinson’s disease.

Estefania Perez and Cruz Lopez, Caregiver and Patient

Cruz is a college student at Berkeley, an avid reader, and one of only a handful of known people around the world with a neurological illness caused by a rare genetic mutation known as Mitchell Syndrome. There is currently no available cure for Mitchell Syndrome. Estefania is Cruz's big sister and caregiver. In addition to caregiving, Estefania works on economic development projects at a community foundation. Together, Cruz and Estefania navigate life with an ultra-rare disease while finding enjoyment with loved ones.

Kristen Wigby, MD Clinical Geneticist and Dysmorphologist at Rady Children's Hospital

Dr. Wigby is a board-certified clinical geneticist and dysmorphologist offering care for children and their families with rare genetic conditions. She also provides consultation for children with a concern for a possible genetic condition, including neurodiverse children, children with congenital anomalies, a family history of an inherited disorder, or other health conditions such as epilepsy or neuromuscular disorders. Dr. Wigby has a special clinical interest and expertise in sex chromosome variations, including Trisomy X and Turner syndrome, Smith-Magenis syndrome, and rare neurogenetic disorders.

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

74

Parking Information

Free parking is available in front of the building and the parking structure.

Accessibility Accommodations

The location is fully accessible to those with physical disabilities.

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