Siwaar Abouhala

Broad Institute

Session:
Lessons from the Field: Best Practices for Engaging Community Partners

Siwaar Abouhala, BA is a full-time Clinical Research Coordinator at the Broad Institute of MIT and Harvard on the Rare Genomes Project. As a health disparities researcher, Siwaar brings a health equity lens to her role. She constructed Project MENA PEDIGREE: Progressing Equity, Diversity, & Inclusion in Genetic Research, Education, & Empowerment — the first-ever national campaign to increase education and representation in genomic medicine for Middle Eastern and North African (MENA) Americans.

Ana Cohen, Ph.D.

Children’s Mercy

Assistant Director, Molecular Genetics Laboratory

Session:
Rural Rare Healthcare

Dr. Ana Cohen is an ABMGG-certified clinical laboratory geneticist and researcher at Children’s Mercy, in Kansas City, focusing on the genomic analysis of individuals with rare diseases. As part of the “Genomic Answers for Kids” (GA4K) research program at the Children’s Mercy Research Institute, Dr. Cohen is investigating additional strategies for diagnostic success in rare diseases, including efforts for increased access to testing for underserved communities such as rural areas.

Claudia Gonzaga-Jauregui, Ph.D.

International Laboratory for Human Genome Research, UNAM

Assistant Professor, Geneticist

Session: Lessons from the Field: Best Practices for Engaging Community Partners

Suzanne Edison

CureJM Foundation

Mental Health Coordinator

Session:
RARE Advocacy Summit
Track 1: Medical Gaslighting and PTSD

RARE Health Equity Forum
Dear Rare Disease, a Storytelling Workshop

Suzanne Edison, MA, MFA, writes often about illness, healing, medicine and art. Her poetry book, Since the House Is Burning, was published in 2022. Her chapbook, The Body Lives Its Undoing, was published in 2018. Poetry can be found in: Lily Poetry Review; JAMA; HEAL; SWWIM Every Day; Intima: A Journal of Narrative Medicine; and in several anthologies including: The Healing Art of Writing, Volume One. Suzanne is a Hedgebrook Fellow and teaches in Seattle and through UCSF in San Francisco.

Abdallah (Abe) Elias, M.D., F.A.C.M.G.

Shodair Children’s Hospital

Chief Medical Officer, Genetics

Session: Rural Rare Healthcare

Abe is a medical geneticist and the medical and laboratory director of the Department of Medical Genetics at Shodair Children’s Hospital. He serves as adjunct associate professor in the department of pediatrics, University of Utah, and as clinical faculty in neurosciences at the University of Montana. Abe is board certified in family medicine (ABFM), medical genetics (ABMGG), and as high complexity clinical laboratory director (HCLD) by the American Board of Bioanalysis (ABB).

Nadia A. Falah, M.D.

Johns Hopkins All Children’s Hospital

Medical and Biochemical Geneticist

Session:
Rural Rare Healthcare

Dr. Falah is a Medical and Metabolic Geneticist at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Dr. Falah earned her medical degree from Tripoli University in Libya. She completed a residency in clinical genetics at the University of Miami School of Medicine and a fellowship in Medical Biochemical Genetics at Duke University. Her passion is to unraveling rare genetic mysteries, addressing complex genetic issues and assisting families in grasping the medical conditions impact

Melissa Haendel, Ph.D.

University of North Carolina Chapel Hill

Director of Precision Health & Translational Informatics

Session:
RARE Advocacy Summit
Track 3: Using AI to Improve Rare Diagnosis

RARE Health Equity Forum:
The Monarch Initiative: Informatics and Open Data Sharing

Melissa Haendel’s background is molecular genetics and developmental biology as well as translational informatics, with a focus over the past decade on open science and semantic engineering. Dr. Haendel’s vision is to weave together healthcare systems, basic science research, and patient generated data through development of data integration technologies and innovative data capture strategies. Her research has focused on integration of genotype-phenotype data to improve rare disease diagnosis.

Cecile Jones

Community Healthcare Ambassador

All In. Rare

Session:
Lessons from the Field: Best Practices for Engaging Community Partners

Cecile Jones serves as the Alabama Community Healthcare Ambassador. She is a native of Alabama who is dedicated to helping others. As a single mother to her wonderful daughter, Lauryn, Cecile has mastered the art of balancing a demanding field with the responsibilities of parenthood. Her innate ability to connect with patients and support them while facing various barriers is unmatched. Cecile is known for her welcoming countenance and gentle but big hugs.

Richie Kahn

Canary Advisors

Co-Founder & COO

Session:
RARE Advocacy Summit
Track 1: Living with Visible and Invisible Disabilities

RARE Health Equity Forum
Diversity in Clinical Trials: What’s Working, What Isn’t?

Richie Kahn is a public health professional by training, a clinical researcher by trade, and a patient advocate by necessity. He is intensely passionate about incorporating patient perspectives into the clinical development process, ultimately reducing the time it takes to bring promising new therapeutics to the patients who need them most.

Shobana Kubendran

KU School of Medicine – Wichita

CGC Genetic Counselor

Session
Moderator
Rural Rare Healthcare

Shobana Kubendran is a Genetic Counselor and Manager of Genetic Counseling Services at The University of Kansas Health System. She holds a medical degree from the University of Trivandrum in Kerala and a Master’s degree in genetic counseling from the University of South Carolina. She has been practicing as a board-certified genetic counselor for 15 years in Kansas and has developed innovative service delivery models to overcome the challenges of providing specialized genetic services.

Rivkah Beth Medow

Filmmaker

Session:
HOLDING MOSES film

Rivkah Beth Medow raises daughters and makes award-winning, character-driven films that deepen connections and build community; credits include the Oscar® shortlisted HOLDING MOSES The New Yorker (Director / Producer); AHEAD OF THE CURVE Netflix (Co-Director/Producer); HUMMINGBIRDS POV (Producer); and OUTCRY: Alchemists of Rage (Producer). Along with Jen Rainin she founded Frankly Speaking Films to produce mesmerizing stories that center strong LGBTQ+ women and non-binary people.

Kim Moran, Ph.D.

UCB

SVP & Head of U.S. Rare Diseases

Session:
Diversity in Rare Clinical Trials: What’s Working and What Isn’t

Kim Moran, SVP & Head of U.S. Rare Diseases at UCB, oversees the U.S. rare disease commercial organization, building the strategy of the UCB U.S. Rare Disease Portfolio, with an emphasis on operations, regulatory, clinical, technology, and marketing.

During her 17 years at UCB, Kim has served as a catalyst for change that has given UCB the unique opportunity to gain closer proximity to patients, to understand their unmet needs, and deliver unique solutions including digital pathways.

Randi Rader

Session:
HOLDING MOSES film

Randi Rader is the main subject of the award-winning documentary short film, Holding Moses. She earned a fine arts degree from New York University, going on to perform in the Broadway show STOMP for many years before heading to Berkeley School of Law. Randi is a practicing intellectual property attorney for Meta, where she’s carved a leadership role at the intersection of caregiving, queerness, disability and the law. Randi lives with her 3 kids in Northern California.

R’Kes Starling

Reveles Clinical Research

Founder

Session:
Diversity in Rare Clinical Trials: What’s Working and What Isn’t

As CEO and Founder of Reveles, R’Kes has over 22 years of providing clinical trial management solutions, specialty pharmacy, complex drug distribution, and clinical management to patients with rare and complex diseases such as Autoimmune, Kidney disease, Cancer, Hemophilia, and Cystic Fibrosis. Reveles is a digital health company pioneering the future of healthcare engagement. Reveles redefines patient engagement by merging individual interests with therapeutic education.

Stephen Taylor

Professor of Music
University of Illinois at Urbana-Champaign

Session:
Data Driven Music: An Exploration of Rare Disease Harmony

Stephen Andrew Taylor composes music that explores boundaries between art and science. His first orchestra commission, Unapproachable Light, inspired by images from the Hubble Space Telescope and the New Testament, was premiered by the American Composers Orchestra in 1996 in Carnegie Hall. Taylor is Professor of Music at the University of Illinois, Urbana-Champaign, where he lives with his spouse, artist Hua Nian.

Tanvee Varma, M.D.

Brigham and Women’s Hospital

Resident Physician

Session:
Diversity in Clinical Trials: What’s Working and What Isn’t

Tanvee Varma, MD is a resident-physician in internal medicine at Brigham and Women’s. As a researcher at Bioethics International, her research is focused on clinical trial diversity, drug policy, and equity in cancer care.

She received her medical degree from the Yale School of Medicine in 2023 and graduated with honors from Wellesley College in 2018. She was awarded the Fulbright-Nehru Research Scholarship in 2019 to conduct research on public health nutrition.

Michele Wright, Ph.D.

Co-Founder, National Organization of African Americans with Cystic Fibrosis

Session:
RARE Health Equity Forum
Living Rare Within Rare

Dr. Wright will discuss the historical contexts, complex issues, arduous challenges, and unconscious biases in the diagnosis and treatment of people of color who are “rare within rare,” while sharing how her husband’s unique rare disease journey inspired and led to their mission and commitment to advocating for underrepresented populations.