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Women's Lifestyle Magazine

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

Feb 19, 2021 05:14PM ● By Two Eagles Marcus

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 focus 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.