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Message from the Executive Director
"If you want to go fast, go alone. If you want to go far, go together". I find this phrase both inspiring and challenging. Our rare disease community is heterogeneous and includes issues that are both urgent and complex. Making meaningful progress will take a willingness to collaborate across the various rare disease communities as well as the ability to raise the need for collective progress to a level of priority in the State. As the Council builds capacity and grows as an agency, we will strive to maintain this balance in all we do.
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Thank you to RDAC members and Minnesota patient groups who attended the NORD Summit!
The National Organization for Rare Disorders Breakthrough Summit held in Washington DC was a great opportunity for the MN Rare Disease Advisory Council to learn about the most current policy challenges facing the community, interact with other RDACs from across the country, meet with our federal legislators, and spend time with other Minnesota groups attending the conference. Special thanks to Council members Rep Tom Murphy, Rep Liz Reyer, and Karl Nelsen who attended with Erica Barnes. Additionally, special thanks to Sen Amy Klobuchar for meeting with the Council members as well as staff from Rep Tom Emmer and Rep Angie Craigs' offices to learn more about the rare disease community in Minnesota.
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Important Dates:
December 7th- next meeting of Drug Formulary Committee
January 25th- next full Council meeting
February 28th- Rare Disease Day
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RDAC welcomes Dr. Nishitha Pillai as the University of Minnesota Medical School council appointee
RDAC is proud to welcome Dr. Nishitha Pillai to the Council. Dr. Pillai is an Assistant Professor in the Division of Genetics & Metabolism at The University of Minnesota. She received her medical degree from the Government Medical College Kozhikode in India and completed her Pediatric Residency at Inova Children's Hospital in Fairfax, Virginia. Subsequently, she completed her Medical Genetics Residency as well as clinical fellowship in Medical Biochemical Genetics at Baylor College of Medicine - Texas Children's Hospital in Houston.
Dr. Pillai specializes in medical genetics and inborn errors of metabolism for patients of all ages. Dr. Pillai's career goal is to treat patients with metabolic disorders and conduct translational research investigating new therapies for inborn errors of metabolism.
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Drug Formulary Review Committee meeting
The Drug Formulary Review Committee will be holding its next meeting December 7th, 2023.
The Minnesota Department of Human Services has posted the agenda and meeting materials for the Dec. 7, 2023, Drug Formulary Committee public meeting.
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Rae Blaylark, patient advocate
Rae is the President and Founder of Sickle Cell Foundation of Minnesota, as well as the proud mother of a young adult son living with sickle cell disease. Ms. Blaylark founded Sickle Cell Foundation of MN as a means to increase local and national awareness of sickle cell disease and is passionate about elevating the collective needs of the entire rare disease community.
Ms. Blaylark brings a unique perspective and experiences into her role as a community leader who has navigated the sickle cell space both outside of the healthcare system as a caregiver and on the inside of the system as part of the pediatric clinical care team.
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Each newsletter will feature a different Council member to help the community get to know us better |
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Project ECHO for transition of care
The Health Care Transition Learning Collaborative (HCT LC), (Gillette Children’s, MDH, Got Transition) is leveraging the innovative Project ECHO learning model, an “all teach, all learn” approach that brings together young adults, parents, clinicians, payers, advocacy groups and anyone interested in health care transitions from throughout Minnesota for 8-10 virtual learning opportunities and multidisciplinary discussions. Each of the sessions will have a brief didactic presentation followed by a case presentation from the participants every session.
Learning Sessions: Learning sessions will be held monthly beginning in October 2023. Each session will take place from 12:15-1:15 p.m.
- October 9, 2023
- November 6, 2023
- December 4, 2023
- January 8, 2024
- February 12, 2024
- March 4, 2024
- April 8, 2024
- May 6, 2024
- June 17, 2024
Conference: Transition Education Conference: June 2024
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The Center for Orphan Drug Research at the University of Minnesota Announces the date for Rare Disease Day 2024
The University of Minnesota Center for Orphan Drug Research Rare Disease Day program will be held Friday, March 7th from 9am-3pm at McNamara Hall. More information to follow, but save the date for this informative event.
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"If you want to go fast go alone. If you want to go far go together."
- Proverb
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