Rare Disease Report

School Events Commemorating Rare Disease Day

FEBRUARY 24, 2014
Corinne McSpedon
Nearly one in 10 Americans has a rare disease, yet few besides those directly affected understand what it’s like to live with such a condition daily. The National Organization for Rare Disorders (NORD) sponsors Rare Disease Day each year with the hope of changing this.

Officially observed on the last day of February, Rare Disease Day (Friday, February 28 this year) will be celebrated at various events this week. The aim is for health care providers, patients and their families, and the public to raise awareness about rare diseases by participating in events that highlight the need for more research and a greater understanding of what it’s like to have a rare condition.
Because approximately half of all rare diseases affect children, it’s unsurprising that schools—from elementary to higher education facilities—will be the setting of many Rare Disease Day events.

Nationwide Observances

Some events will commemorate Rare Disease Day, whereas others are designed to enable patients to share their perspective with their peers, the public, and health care professionals in training. Below are descriptions of a few events taking place this week (a complete list can be found here):

  • Lieutenant Governor Rebecca Kleefisch is scheduled to visit sixth graders at Nature Hill Intermediate School in Oconomowoc, Wisconsin, on Friday, sharing a proclamation from the governor marking the day as Rare Disease Day.

  • The School of Health Related Professions and the student chapters of the Drug Information Association at Rutgers, The State University of New Jersey, have organized the school’s first celebration of Rare Disease Day, to be held on Tuesday, February 25.

  • At the West Virginia School of Osteopathic Medicine in Lewisburg, a student with polycystic ovarian syndrome will present a lecture that aims to both educate others about rare diseases and share her perspective on living with one.

One of the first events to occur this week was the Rare Disease Awareness Network’s (RDAN’s) first "Health and Wellness Fair,” held at Greater New Bedford Regional Vocational Technical High School in Massachusetts on Saturday, February 22. RDAN is a nonprofit organization located nearby that works to support people with rare diseases and educate the public about these conditions. The school is located in a highly visible area, and the staff provided the equipment needed to set up for the fair.
Rebecca Alves, the president of RDAN—which originated when her family and friends, and ultimately strangers, rallied to ensure she’d continue to receive treatment for the debilitating symptoms of Devic’s disease—says that more than 28 vendors and organizations participated in this free event, which was open to the public and featured a blood drive, demonstrations, and various children’s activities, such as face painting and photo sessions.
She estimates that the fair attracted 250 people, most coming from the surrounding area but some traveling from as far away as Maryland. “It was a special, spectacular moment,” Ms. Alves says of the event, which she describes as “very interactive.”
Although it’s always useful to obtain information from pamphlets and other written materials, Ms. Alves found that attendees were glad for the opportunity to talk to those working the fair's tables. “People were able to ask questions they weren’t even sure they’d needed to ask.”
The health vendors included, among others, representatives from a community health center and hospice care as well as Lyme disease experts. The last displayed samples of various ticks, which proved to be entertaining for the children and educational for the adults.

Holding the fair the weekend before Rare Disease Day enabled RDAN “to get the word out about our organization ahead of the launch of our website, rdan.org, on Friday,” according to Ms. Alves. “At the same time, we were able to raise awareness, help the community, and highlight all of the events this week that lead up to Rare Disease Day.”
The positive feedback her organization has received from attendees has ensured this won’t be a one-time event. “We’ll absolutely be holding another fair next year,” she says.

Activities for Children of All Ages

Teachers and schools looking for ideas about ways they can commemorate Rare Disease Day should visit rarediseaseday.us, which contains a wealth of information about rare diseases and suggested educational activities.
For high school students, NORD worked with a genetic counseling master’s degree student to create a curriculum supplement for biology and health classes that can be used throughout the week. It’s designed to advance students’ scientific understanding of rare diseases, promote compassion and respect, and teach students how to think critically about issues related to these conditions (more information can be found here).
The National Institutes of Health’s “Rare Diseases and Scientific Inquiry” curriculum supplement is ideal for middle school students (grades 6 through 8), who’ll learn how researchers gain a better understanding of rare diseases and treatment options through the use of scientific inquiry (more information can be found here).
Younger children can learn about rare conditions and gain more empathy for those living with them by participating in various learning activities. To follow is NORD’s suggested list of in-school activities, which can be adapted for children of all ages (more information can be found here).
  • Have an assembly about Rare Disease Day. Ask NORD if there is an organization in your area that might be able to provide a speaker.
  • Provide each student with an index card with the name of a rare disease. Have the student research the disease and write a brief description of it on the card. Display all of the cards in a central location, such as the school library.
  • Ask students if they know anyone living with a rare disease and, if so, to write a paragraph about how the rare disease affects that person’s life. Make a scrapbook with all of the stories.
  • Download the Rare Disease Day “hand” logo from NORD’s website (access all NORD materials for downloading here). Have young children color it and explain that this symbol is being used around the world for Rare Disease Day.
  • Invite a local pediatrician or other physician, or a nurse, with knowledge of rare diseases to speak.
  • During daily announcements, say a quote or short statement to remind the students of Rare Disease Day.
  • Post information on bulletin boards.
  • Have a Student Information Table at lunch.
  • Hand out beads in a school assembly, and give 1 of every 10 students a bead of a different color to represent the 1 in 10 Americans with rare diseases.
And one more activity that all ages can participate in....since many rare diseases are genetic in nature, people of all ages are encouraged to wear jeans on February 28th.

Images courtesy of the Rare Disease Awareness Network

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