patient centered concept

Elevating Patient Voices: Rare Disease Day 2024

Author
VP Jakub Tolar, MD, PhD

The heart of health care lies in understanding the unique journeys of individuals. Rare Disease Day is not just about medical advancements; it's about acknowledging and honoring the lived experiences of patients. Their stories, resilience, and insights shape our understanding of rare diseases in profound ways.

A guiding principle of community-driven research is letting communities lead and listening to what matters to them. As we approach Rare Disease Day, we are not only celebrating the progress made in rare disease research but also recognizing the invaluable contributions of those who navigate the challenges of rare conditions every day.

I invite you to attend the annual Rare Disease Day event, co-led by the College of Pharmacy and Medical School, on March 7. This year’s theme will focus on “
Orphan Products for Rare Diseases: Availability and Accessibility - They're Not The Same Thing”. The event will feature a patient advocacy group breakfast, poster symposium, and more. Tune into what our trainees are sharing and how we can collectively elevate patient voices.

Driving Innovation & Discovery

child getting dental care

Academic Health in Action: Give Kids a Smile Provides Free Oral Health Care for Children
The UMN has been part of the national "Give Kids a Smile" event for 20 years with dental students leading the charge. This year’s event was a large undertaking; dental students saw 64 children aged 15 and younger, providing examinations, x-rays, cleanings and fluoride varnishes, as well as additional care as needed that extends beyond the day of the event.

Lou Clark

M Simulation Executive Director Leads Global Network for Human Simulation Education
Lou Clark, executive director for M Simulation, was elected president of the Association of SP Educators, an international organization of educators dedicated to human simulation through promoting best practices, disseminating research and scholarship, advancing professional knowledge and skills, and elevating the profession’s credibility and expertise. During her presidency, Clark is focused on creating more opportunities for leadership development and mentoring for newer to mid-career simulation professionals and increasing the visibility of standardized patient educators.

 

Advancing Professional Educational and Training

calculator

Mark Your Calendar for the 5th Annual Interdisciplinary Health Data Competition
This competition presents a unique opportunity for U of M graduate students across all disciplines to apply and showcase their expertise in addressing real-world health care issues. Whether you're passionate about policymaking, quality of care, accessibility and affordability, public health, or health equity, this event invites you to leverage data science to make meaningful contributions.

hands folded together

Contribute to the Collection: Death, Dying & End of Life Resources
The DDD Task Force steering committee is seeking faculty, instructors, staff, and advanced learner engagement in an innovative pursuit of interprofessional collaboration related to death, dying, and disposition topics in health professions education. If you have expertise or particular interest in these topics, consider including your work in the online repository which contains resources for the health care team of students, learners and professionals. Materials are also for patients, families and caregivers. This library is created and curated by an interprofessional team of experts.

 

Partners with Communities

person looking to future

AmeriCorps Opportunity Fair - Explore Paid Service
The AmeriCorps Opportunity Fair is an event for students to learn more about AmeriCorps as a career-boosting way to support Minnesota communities in the summer and after graduation. Explore ways to serve your community via education, environment, public health, housing, and more. Learn about the special benefits of AmeriCorps, including career development, money for school, and pausing student loan payments.

 

U-Wide Events and Opportunities

science and global health equity concept

Moving from Science to Action that Advances Environmental Justice and Health Equity
Join the Center for Bioethics on March 1 for an Ethics Grand Rounds to discuss structural determinants of environmental health disparities and community-engaged research to develop decision-support tools that advance environmental justice.

 

women silhouettes

Empowering Women, Transforming Lives: A Global Celebration of Safe Motherhood
Join the Center for Global Health and Social Responsibility for an evening at the Weisman Art Museum to celebrate International Women's Day 2024 with a global event on March 14.

Feb. 24: Goldy vs. Cancer at the Science Museum of MN
Come support Masonic Cancer Center researchers as they educate and engage museum attendees on everything from Cancer Bio 101 to hands-on laboratory research techniques.

Feb. 26-March 1: Research Ethics Week
This annual week-long series of college and department-led educational opportunities focuses on professional development and best practices to promote, maintain, and model high standards of ethics and integrity in research.

Feb. 28: Annual Research Ethics Day Conference
Join the Consortium on Laws and Values at “Building Partnerships to Advance Ethical Research: Collaborators, Communities & Companies” and learn to build partnerships with investigators, communities, clinical research professionals, and companies to promote the ethical conduct and translation of research.

Feb. 28: Bakken Center Free Webinar: Supporting Grieving Children and Teens
This session is for adults who are supporting children, teens and young adults who have experienced or are anticipating the death of a loved one.

Feb. 29: Time is Running Out – Reserve Your Space Today for the 2024 MN State Fair
Recruit hundreds of participants within days at the Driven to Discover Research Facility at the Minnesota State Fair.

Other News

20 Years of HERO
We are filled with profound gratitude and admiration for the incredible work accomplished over the years.
Nhi Lang, Claire Nash, and Margaret Perry
They're working to extrapolate outcome measure data to determine the effectiveness of treatments.
Clinical care at CUHCC
Integrating primary care, dental care, mental health, and social support, the U’s Community-University Health Care Center is a vibrant…