Children's Health

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

The event taking place February 23 - 27 is free and open to the public

GRAND RAPIDS, Mich., February 19, 2020 – 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 23-27, 2021. 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 at 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 event begins at 5:00 p.m. EST on Tuesday, February 23 with keynote speaker, Matt Might, Ph.D., Director of the Hugh Kaul Precision Medicine Institute University of Alabama at Birmingham (UAB). Dr. Might’s NIH and philanthropically funded research focuses on precision prevention, diagnosis, and therapeutics across rare diseases, cancer and common/chronic conditions.

The virtual event will also host a different plenary session each evening at 7:00 p.m. Wednesday, February 24 through Friday, February 26. On Saturday, February 27 at 9:00 a.m., event organizers will also host a patient panel discussion followed by break-out sessions that the community is welcomed to attend.

The collaborative group is also excited to announce the launch of a new community partnership and website where event details can be accessed. Rare Disease Network is 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 university that equips its 3,300 students from 46 U.S. states, 66 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 offers 100+ majors and programs, including graduate-level offerings in accounting, education, geographic information science, media and strategic communication, speech pathology and audiology. Calvin students engage in intensive internships, community-based service learning, and significant research that results in publishing and presenting alongside world-class faculty. The university’s 400-acre campus is located in the vibrant city of Grand Rapids, Michigan. 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 System, a not-for-profit, integrated health system, is committed to improving the health and wellness of our communities. We live our mission every day with 31,000 compassionate professionals, 4,600 medical staff experts, 3,300 committed volunteers and a health plan serving 1 million members. Our talented physicians and caregivers are privileged to offer a full continuum of care and wellness services to our communities through 14 hospitals, including Helen DeVos Children’s Hospital, 150 ambulatory sites and telehealth offerings. We pursue health care solutions for today and tomorrow that diversify our offerings. Locally-governed and based in Grand Rapids, Michigan, our health system provided $550 million in community benefit in calendar year 2019. Thanks to the generosity of our communities, we received $37 million in philanthropy to support research, academics, innovation and clinical care. Spectrum Health has been recognized as one of the nation’s 15 Top Health Systems by Truven Health Analytics®, part of IBM Watson HealthTM.

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Contacts: 

Rick Jensen, Spectrum Health
richard.jensen@spectrumhealth.org

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

Amy Wilstermann, Calvin University
amw26@calvin.edu

Spectrum Health System, a not-for-profit, integrated health system, is committed to improving the health and wellness of our communities. We live our mission every day with 31,000 compassionate professionals, 4,600 medical staff experts, 3,300 committed volunteers and a health plan with more than 1 million members. Our talented physicians and caregivers are privileged to offer a full continuum of care and wellness services to our communities through 14 hospitals, including Helen DeVos Children’s Hospital, 150 ambulatory sites and telehealth offerings. We pursue health care solutions for today and tomorrow that diversify our offerings. Locally-governed and based in Grand Rapids, Michigan, our health system provided $550 million in community benefit in calendar year 2019. Thanks to the generosity of our communities, we received $37 million in philanthropy to support research, academics, innovation and clinical care. Spectrum Health has been recognized as one of the nation’s 15 Top Health Systems by Truven Health Analytics®, part of IBM Watson HealthTM.