Members - Colorado Rare Disease Advisory Council

Members

Council Members

The council consists of twelve (12) voting members appointed as follows:

The president of the senate shall appoint three (3) members, including:

One (1) representative from academic research in the state who receives grant funding for rare disease research;
One (1) geneticist practicing in Colorado; and
One (1) physician licensed and practicing in Colorado with experience treating rare diseases;

The minority leader of the senate shall appoint three (3) members, including:

One (1) registered nurse or advanced practice registered nurse licensed and practicing in Colorado with experience treating rare diseases;
One (1) pharmacist with experience dispensing drugs used to treat rare diseases; and
One (1) person who has a rare disease;

The speaker of the house of representatives shall appoint three (3) members, including:

One (1) representative of a rare disease patient organization operating in Colorado that is not affiliated with the facilitator;
One (1) representative of the biotechnology or pharmaceutical industry; and
One (1) representative of a health insurer; and

The minority leader of the house of representatives shall appoint three (3) members, including:

One (1) person who has a rare disease;
One (1) parent whose child or children have been diagnosed with a rare disease; and
One (1) caregiver of a person with a rare disease.

The director of the office of health equity, created in section 25-4-2204, or the director’s designee, shall serve as an ex officio, nonvoting member of the council.

Lianne McLean

Chair

Lianne McLean

Chair

Lianne McLean is a registered nurse with over a decade of clinical experience and an extensive background in rare and ultra-rare disease management. As the manager of a large rare disease and clinical genetics program she led initiatives that reduced patient wait times, improved access to services and contributed to clinical research. Lianne is committed to ensuring patient and family voices are included in decision making processes. She has facilitated several Patient & Family Advisory committees which have successfully advocated for increased program funding and services for patients with rare diseases.

Pete Pidermann

Vice Chair

Pete Pidermann

Vice Chair

Peter R. Pidermann is an attorney/litigator with the law firm of Taylor Anderson, LLP. Although headquartered in Colorado, Taylor Anderson specializes in assisting with particularly difficult to manage cases and/or cases heading to trial across the United States. Individually, Peter has a broad range of experience in complex litigation in state and federal courts. His practice includes matters involving personal injury, commercial disputes, products liability, toxic torts, community association litigation, professional liability, employment/civil rights litigation, and municipality defense. By way of background, Peter graduated with a Bachelor of Arts in History from Dartmouth College, where he captained the football team in 2010, as well as running track and playing rugby. After a brief stint playing football overseas in Europe, he graduated with a Juris Doctorate from Florida State University's College of Law. His son, P. Hayes Pidermann, was diagnosed with microphthalmia shortly after birth. Microphthalmia is an eye abnormality where one, or both, eyeballs are abnormally small. Typically speaking, the microphthalmic eye is functionally blind.

Dr. Shawn McCandless

Academic research in the state who receives grant funding for rare disease research

Dr. Shawn McCandless

Academic research in the state who receives grant funding for rare disease research

Shawn E. McCandless, MD, is Professor of Pediatrics, and the Section Head for Genetics and Metabolism at the University of Colorado Anschutz Medical Campus and Chair of the Department of Genetics and Metabolism at Children’ s Hospital Colorado. His research and clinical care focuses on inborn errors of metabolism (IEM) and Prader-Willi syndrome (PWS), including publicly and industry funded clinical trials for children and adults with IEMs and PWS. He is a Past President of the Society for Inherited Metabolic Disorders (SIMD), is an active leader in the Urea Cycle Disorders Consortium of the NIH Rare Diseases Clinical Research Networks and is currently involved in a variety of clinical trials. Previous employment includes working as a general pediatrician at the Northern Navajo Medical Center in Shiprock, NM, and faculty positions in Genetics and Metabolism at the University of North Carolina – Chapel Hill, and Case Western Reserve University, prior to moving to Colorado in 2018.

Marcee Aude

Academic research in the state who receives grant funding for rare disease research

Marcee Aude

Academic research in the state who receives grant funding for rare disease research

Marcee Aude is the VP of Community Initiatives at the Epilepsy Foundation of Colorado & Wyoming where she has been a leader and instrumental in the significant development of the Foundation over the past 17 years. Marcee has served in many roles including Interim Executive Director and developed innovative, impactful and nationally recognized programs at the Foundation. She has led successful legislative advocacy efforts for those impacted by epilepsy and chronic conditions. She is a strategic thinker and understands the complexities of working within systems. Marcee began her career with a Bachelor of Art in Social Work and Criminal Justice from Iowa State University and went on to receive her Master’s degree in Psychology and Counseling from St. Mary’s University of Minnesota. She has worked as a social worker and therapist with children and families in county human services and corrections as well as with those impacted by developmental disabilities.

Dr. Austin Larson

Geneticist practicing in Colorado

Dr. Austin Larson

Geneticist practicing in Colorado

Dr. Larson is board certified in pediatrics, medical genetics and biochemical genetics. He practices at Children's Hospital Colorado and is on the faculty of the University of Colorado School of Medicine. He is a site investigator for several clinical trials for rare diseases. He is also the program director for the residency program in Medical Genetics and Genomics. Within genetics, his specific disease interests include mitochondrial diseases and congenital disorders of glycosylation.

Nirali Manoharan, PharmD

Pharmacist with experience dispensing drugs used to treat rare diseases

Nirali Manoharan, PharmD

Pharmacist with experience dispensing drugs used to treat rare diseases

Dr. Manoharan is a board-certified pharmacotherapy specialist and holds an advanced practice pharmacist license. She completed her pharmacy training and residency in California prior to beginning employment in Colorado. She is currently a supervisor for the ambulatory pharmacy clinical teams at UCHealth. This team of pharmacists supports specialty care clinics at the Metro campus and assists rare disease and all patients in accessing needed medications. Prior to this role, she was a pharmacist and supervisor in the Medication Access and Renewal Center at UCHealth where she assisted patients and providers in navigating through the insurance prior authorization process for specialty and high-cost medications.

Bridget Dandaraw-Seritt

Person who has a rare disease

Bridget Dandaraw-Seritt

Person who has a rare disease

Bridget Dandaraw-Seritt has Ehlers-Danlos Syndrome, multiple autoimmune diseases, and a host of comorbidities. She founded Advocates for Compassionate Therapy Now to help educate, connect, and support medically complex Coloradans. She’s worked in the medically complex and rare communities for over a decade.

Amy Berenbaum

Biotechnology or pharmaceutical industry

Amy Berenbaum

Biotechnology or pharmaceutical industry

Amy Berenbaum leads Policy + Advocacy for Colorado BioScience Association. An attorney who holds a Master of Bioethics (M.B.E.), Amy develops strategies to support a pro-business and pro-patient environment for health innovation in Colorado. Working with the President & CEO and CBSA Board of Directors, she advances state and federal policies that support the companies and organizations in our ecosystem and the patients they serve. Amy draws on her background in healthcare law and policy, regulatory compliance, and member-based organizations to advocate for policies that support the health and growth of life sciences in Colorado. She champions issues critical to the ecosystem, including patient access to health innovation, capital and growth, incentives for innovation, favorable tax and regulatory policies, and workforce cultivation. Before joining CBSA, Amy advocated for physicians, residents, and medical students as the Senior Director of Policy at Colorado Medical Society. Previously, she served as Senior Manager of Corporate Compliance at DaVita Kidney Care and as an Associate Attorney focused on healthcare law at Hall, Render, Killian, Heath & Lyman. Amy earned a J.D. from the University of Denver Sturm College of Law, where she was a Chancellor’s Scholar and graduated Order of the Coif. She holds an M.B.E. (Master of Bioethics) from the University of Pennsylvania Perelman School of Medicine and a B.A. in health & societies from the University of Pennsylvania, graduating magna cum laude.

Amanda Boone

Person who has a rare disease

Amanda Boone

Person who has a rare disease

Amanda is a cystic fibrosis patient and the co-founder of CF United, a grassroots organization ensuring affordable access to therapies for CF and rare disease patients. Amanda became a leading voice in protecting access—especially when her life saving medication faced affordability challenges through Colorado’s Prescription Drug Affordability Board. Amanda now uses her voice to make sure patients are heard, all while finding peace in rural Colorado with her husband, son, dogs, and horses. Amanda copes with her disease through laughter and realism.

Dr. Sai Medi

Health insurer

Dr. Sai Medi

Health insurer

Dr. Sai Medi is an Internal Medicine and Pediatrics trained physician. He is an Associate Medical Director of Rocky Mountain Health Plans, and currently practices rural hospital and emergency medicine.

Ray Merenstein

Caregiver of a person with a rare disease

Ray Merenstein

Caregiver of a person with a rare disease

Ray Merenstein owns RDM Communications, a fundraising consulting firm and serves as Executive Director of NAMI Colorado (National Alliance on Mental Illness). He has over three decades of experience in fundraising, public relations, lobbying and market research benefiting not-for-profit organizations. After a decade of health care advocacy in Washington, DC, he served as Vice President at Children’s Hospital Colorado Foundation during their $250 million Imagine the Miracles campaign. He holds a B.A. in American Studies from Tulane University and an M.A. in Mass Communication from the University of Florida. He and wife, Ilana Steinberg, are Colorado natives with one son and two daughters. They share a passion for social justice, mental health, travel, NPR’s Sunday Puzzle and desserts (Ray especially likes lemon meringue and key lime pies).

Open Position

Physician licensed and practicing in Colorado with experience treating rare diseases

Open Position

Physician licensed and practicing in Colorado with experience treating rare diseases

Open Position

resources

Additional resources

Colorado RDAC

RDAC Mission Document
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Government – State

Colorado Rare Disease Advisory Council
Colorado Department of Human Services
State of Colorado
Colorado Department of Health Care Policy and Financing

Health

Health First Colorado
Connect for Health Colorado

Organizations and coalitions

National Organization for Rare Disorders (NORD)