Children's Health

Virtual Rare Disease Day Event to Unite Patients, Caregivers and Families Living with Rare Disease

The event taking place February 21 - 28 is free and open to the public

Unborn Kenzie Bennett was consistently measuring three to four weeks ahead of her gestational age during ultrasounds. Doctors thought it could be Down syndrome but later on diagnosed her with Megalencephaly-capillary malformation syndrome, a rare genetic disorder that causes parts of the body to grow faster than others. (Taylor Ballek | Spectrum Health Beat)

GRAND RAPIDS, Mich., Feb. 21, 2022 – Calvin University, Michigan State University College of Human Medicine, and Spectrum Health Helen DeVos Children’s Hospital are pleased to announce a virtual Rare Disease Day Symposium, February 21-28, 2022. This free, virtual event serves to unite patients, caregivers and families, medical professionals, researchers, advocates and students around the common goal of understanding what it means to be rare and how to support the rare disease community.

“More than 300 million people worldwide live with one of over 6,000 rare diseases; many having more questions than answers,” said Dr. Caleb Bupp, division chief for genetics, Spectrum Health. “These patients and families need hope today and for the future. Rare Disease Day hopes to raise awareness and make connections for these people who need it most.”

The virtual event will feature pre-recorded videos on a variety of topics sessions each evening at 7:00 p.m. Tuesday, February 22 through Saturday, February 26.

On Monday, February 28 at 7 p.m., keynote speaker, Dr. Jena Krueger, will talk about navigating rare diseases as a doctor, researcher and mom. Dr. Krueger is the section chief of the pediatric neuromuscular program at Helen DeVos Children’s Hospital in Grand Rapids, Michigan and clinical assistant professor in Pediatrics and Human Development at Michigan State University. She splits her time between general pediatric neurology and neuromuscular, with a particular interest in spinal muscular atrophy and genetic therapies.

This community partnership is excited to share the Rare Disease Network, the place to connect with every aspect of the rare disease community, both locally and nationally. From patients and families to students and teachers, to providers and advocates, every voice matters.

Rare Disease Day is all about raising awareness for rare diseases. By the numbers:

  • More than 6,000 conditions are considered rare diseases.
  • About 30 million people, or one in 10 people, in the U.S. are affected by a rare disease.
  • Half of the people with rare diseases are children. This is because pediatric cancer is defined as a rare disease.
  • 80% of rare diseases are genetic, meaning they are caused by a change or mutation in a person’s DNA.
  • The remaining 20% of rare diseases are degenerative or proliferative diseases, or they are the result of bacterial or viral infections, allergies or environmental factors.
  • 95% of rare diseases do not have FDA-approved treatments.
  • This means 90% of health care providers treat a majority of their rare disease patients with drugs and therapies that have not yet received FDA approval.
  • 50% of people with cancer have a rare form of cancer including pancreatic, ovarian, thyroid or brain cancer, among others.
  • The uncommon symptoms of rare diseases often mean that people receive the wrong diagnosis or go untreated.
  • Rare Disease Day was started in 2008 and is now observed in 65 counties.

 

About Calvin University

Founded in 1876, Calvin University is a top-ranked, liberal arts institution that equips its nearly 3,300 students from 47 U.S. states, 49 countries, and four Canadian provinces to think deeply, to act justly, and to live wholeheartedly as Christ’s agents of renewal in the world. Calvin is proud to offer 100+ majors and programs, including a growing number of graduate-level programs. Calvin students engage in intensive internships, community-based service learning, and significant research that results in publishing and presenting alongside world-class faculty.  Discover more at calvin.edu.


About MSU College of Human Medicine

Since 1964, Michigan State University College of Human Medicine has drawn upon MSU’s land grant values to educate exemplary physicians, discover and disseminate new knowledge and respond to the needs of the medically underserved in communities throughout Michigan. The medical school’s statewide footprint includes seven community campuses: Flint, Grand Rapids, Lansing, Midland Regional, Southeast Michigan, Traverse City and the Upper Peninsula Region. MSU’s Grand Rapids Research Center has centers of excellence in Parkinson’s disease research and women’s health research. The college’s Flint campus is home to MSU’s public health research and the MSU-Hurley Children’s Hospital Pediatric Public Health Initiative. For more information, visit the Michigan State University College of Human Medicine Web site at www.humanmedicine.msu.edu.

About Spectrum Health
Spectrum Health is a not-for-profit health system that provides care and coverage, comprising 31,000+ team members, 14 hospitals (including Helen DeVos Children’s Hospital), a robust network of care facilities, teams of nationally recognized doctors and providers, and the nation’s third-largest provider-sponsored health plan, Priority Health, currently serving over 1 million members across the state of Michigan. People are at the heart of everything we do. Locally governed and headquartered in Grand Rapids, Michigan, we are focused on our mission: to improve health, inspire hope and save lives. Spectrum Health has a legacy of strong community partnerships, philanthropy and transparency. Through experience, innovation and collaboration, we are reimagining a better, more equitable model of health and wellness.

 

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Contacts: 

Andrea Finnigan, Spectrum Health

andrea.finnigan@spectrumhealth.org

Geri Kelley, MSU College of Human Medicine
kelleyg3@msu.edu

Amy Wilstermann, Calvin University
amw26@calvin.edu

Contact:
Andrea Finnigan
Media Relations and Newsroom Web Manager
Office: 616.486.2535
Mobile: 616.293.6050
Email: andrea.finnigan@spectrumhealth.org