Rare Disease Day

Feb. 28, 2017

Virden, MB - Rare Disease Day occurs every year on the last day of February, with the primary focus on raising awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. The Oil Capitals were proud to welcome Rita Scharff, on Friday, February 17, where she had a table set up, on the main concourse of the rink, which was available for anyone interested in learning and understanding more about rare diseases. Scharff became passionate about rare diseases when she found out her son had a rare disease. From this year to last  her teaching tactics haven’t changed a lot, as her goal remained the same, increase awareness regarding rare diseases.

Currently, there are over 7,000 types of rare diseases and they are finding more each day. The 2016 statistics for rare diseases show that only 60 percent of treatments are available in Canada. When these treatments finally become available here, it can be up to six years after they have been available to citizens in the United States and Europe. According to Global Genes, on average, it takes most rare disease patients eight years to receive an accurate diagnosis. Within this time period, they have seen over 10 specialists and have been misdiagnosed three times.

Scharff said, “This is important for our family, as the biggest challenges for the families affected is receiving a diagnosis.  The more we can spread the message about rare diseases and genetic testing, the less time it will take for the diagnosis.”

The Oil Capitals have helped play a role in spreading awareness for the last couple of years, that Scharff has decided to get the word out there.  Rita said, “The Oil Capitals have helped by providing the opportunity to increase awareness through the Rare Disease Night at one of the February home games and the various promotional materials they send out.”

Assistant Captain, Morgan Magwood was helpful with supporting Scharff bring awareness around rare diseases. “He provided his teammates with the blue jean ribbon to wear, which is a symbol of rare disease awareness.”  Scharff continued, “He also took Cade [Rita and Chad Scharff’s son] to meet the team after the game and get a photo with them which we used in our thank you on social media to the Oil Caps.  We have already received feedback from the players asking about Cade and rare diseases looking to gain a better understanding of his syndrome.”

The community has been a really important part of Scarff getting the awareness spread about Rare Disease Day. Scharff said, “ The schools, Virden Boston Pizza, Silverline Oilfield Services, Candace Creations, and of course the Oil Capitals have been amazing and we can’t thank them enough.”