Advocacy Day is a week away! Join patient advocates, policy makers, national policy experts, and medical professionals as we raise awareness for policies that impact the rare disease community. #raredisease #MNRDAC RSVP appreciated but not required
The Minnesota Rare Disease Advisory Council
公共卫生
St. Paul ，MN 134 位关注者
Our mission is to provide advice on research, diagnosis, treatment, and education related to rare diseases.
关于我们
The Minnesota Rare Disease Advisory Council envisions a
state where every Minnesota Citizen living with a rare
disease has access to a timely diagnosis, expert/
coordinated care, as well as individualized treatment,
management, and support throughout lifespan
- 网站
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https://mnraredisease.org/
The Minnesota Rare Disease Advisory Council的外部链接
- 所属行业
- 公共卫生
- 规模
- 2-10 人
- 总部
- St. Paul ，MN
- 类型
- 政府机构
地点
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主要
获取路线
1600 University Avenue
#8
US，MN， St. Paul ，55104
The Minnesota Rare Disease Advisory Council员工
动态
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Rare Disease Advocacy Day is coming up quickly and we are so honored to be joined by our co-host advocacy partner, the Hemophilia Foundation of Minnesota/Dakotas. Under the leadership of Vicki Kopplin HFMD is doing amazing work to improve systems not only for their community but for the rare disease community together. Here is a look at the day's program: 3:15 PM – Erica Barnes (RDAC) and Vicki Kopplin (HFMD) Introduction to the Rare Disease Community, 2025 Legislative Priorities ?3:30 PM – NORD Medicaid for the Rare Disease Community ?3:50 PM – Question and Answer ?4:00 PM – RDAC Legislative Council Members/ Chief bill authors Legislative discussion 4:20 PM – Question and Answer 4:30 PM – Patient Advocacy Groups speak to the importance of specific bills for their communities / patient advocacy stories 5:00 PM – Tabling/networking time 5:30 PM – Conclusion RSVP to [email protected] for more information
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Our next Project ECHO session is coming up quickly! This CE eligible session will cover trauma informed care in rare diseases and feature our very own Council member Angela Cowen. Join us (more details in the link). https://lnkd.in/g695iQZn
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The Minneapolis skyline is always beautiful and will be even more so tonight! In honor of Rare Disease Day, the 35W bridge will be lit in rare disease colors from 1/2 hour before Sunset to 1/2 hour after Sunrise. What a great night to take a stroll downtown and take a picture with the bridge in the background! #rarediseaseday
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MNRDAC is looking forward to bringing the Minnesota rare disease community together to collectively raise our voices to policy makers. If you are an organization (or individual) who would like to join the list of advocates, please let us know! We are proud of our strong partnerships with advocacy groups and are closely working with the Hemophilia Foundation of Minnesota and the Dakotas and others. Sickle Cell Foundation of MN ALS Association Midwest Rett Syndrome Foundation KrabbeConnect New Hope Research Foundation Pompe Warriers Foundation Yaya Foundation
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There is still time to register for Monday's ECHO session!
The increased availability of genetic testing has transformed the diagnostic landscape for people with rare diseases. However, using genetic testing for rare diseases in clinical practice remains challenging for many providers. In our February 24 session, Nishitha Pillai, MD, assistant professor in the Division of Genetics & Metabolism at the University of Minnesota Medical School, and Alexandra Mohror, MS, CGC, a genetics counselor at Essentia Health, will team up to provide insight into the use of genetic testing for diagnosing rare diseases. Learn more about this no-cost Project ECHO series from The Minnesota Rare Disease Advisory Council and register today at: https://ow.ly/4teb50UXNz6
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CEs provided and registration is free!
Join us for the next Project ECHO series on February 24th from noon–1:00 PM CST where Dr. Nishitha Pillai, medical geneticist, and Alexandra Mohror, genetic counselor, are discussing:?Genetic Testing as a Tool for Timely Diagnosis of Rare Diseases. Click here to register: https://lnkd.in/g695iQZn
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Our next ECHO session will feature two council members and stellar clinicians who will cover the topic of genetic testing for rare disease diagnosis. Nishitha Pillai and Alexandra M. will be facilitating the session with the following objectives: Understand the Basics of Genetic Testing – Explain the fundamental principles of genetic testing, including the types of tests available (e.g., diagnostic, predictive, carrier screening, pharmacogenomics) and the genetic conditions they assess. ?Identify When to Order Genetic Testing – Discuss clinical scenarios where genetic testing is appropriate, including indications for testing in different medical specialties, patient populations, and risk factors that warrant further genetic evaluation. Compare the Different Forms of Genetic Testing – Analyze the strengths, limitations, and nuances of various genetic testing methods (e.g., single-gene testing, panel testing, whole-exome sequencing, whole-genome sequencing), including factors influencing test selection, interpretation, and ethical considerations. CEs are provided to clinicians and registration is free!
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Join us for the next Project ECHO series on February 24th from noon–1:00 PM CST where Dr. Nishitha Pillai, medical geneticist, and Alexandra Mohror, genetic counselor, are discussing:?Genetic Testing as a Tool for Timely Diagnosis of Rare Diseases. Click here to register: https://lnkd.in/g695iQZn
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