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  1. Rare Disease Day is Here. Find an Event Near You.

    February 28, 2018 by Andrea

    Social Media Profile Badge Rare Disease Day (2)

    The most common of the rare diseases, sickle cell affects about 100,000 Americans. Even so, there's still a lot to be done on the research front to fully understand it, how to treat it more effectively, and potentially, how to find a cure. Your participation in Rare Disease Day can help with all of these things.

    Today, February 28, 2018, 80 countries will unite to recognize Rare Disease Day for the 11th year in a row, with hundreds of events taking place across the world. This year's theme is research, and the plan is to get as many patients, families, friends, and other allies as possible to actively "call on policy makers, researchers, companies, and healthcare professionals to increasingly and more effectively involve patients in rare disease research."

    Take a look at the events below to find one near you. (Can't attend in person? Show your support on social media using these ideas.)

    1) Running on Air's Third Annual Rare Disease Day Virtual Race
    2) Harmony 4 Hope's Rock Rare Disease: A Global Online Music Campaign
    3) Georgia Rare Disease Day Seminar/Meet-and-Greet with Legislators
    4) Broad Institute's Third Annual Beyond the Diagnosis Art Exhibit
    5) Eight Annual Sanford Rare Disease Symposium
    6) Rare Disease Week on Capitol Hill
    7) Swing Fore the Kids Rare Disease Awareness Event

    For a full list of events happening all over the globe, click here.

  2. This UK-Based Org. Uses Stories to Promote Successful Change in Healthcare

    February 19, 2018 by Andrea

    everyone has a story

    "Everybody has a story. And there's something to be learned from every experience." - Oprah 

    One of the most effective ways of connecting with others can be through storytelling. It allows us to envision ourselves in similar circumstances as the people in the stories and better empathize with what those people may be going through, learn from their experiences, and/or spur us to get involved in something we may never have considered before. In fact, Oprah Winfrey has built an empire by sharing her story, as well as those of countless others, to inspire, motivate, unite, and initiate progress. 

    Incorporating a similar premise, the Cambridge, England-based organization Patient Voices, which has been at work since 2003, seeks to record and share stories of patients living with various conditions for the purpose of helping improve the quality of healthcare and gather valuable insights for research reasons. 

    One segment of stories they produce called "Terrific Teens" is part of a larger project that also involves workshops for the teen patients and their families -- and of the two conditions featured in this collection (so far), one compiles the stories of teen sickle cell warriors. Told in short videos, each one ranging in length from one-and-a-half minutes to three-and-a-half minutes, each teens' story gives a glimpse into their lives, their experiences with crises, and how they cope and continue to push through daily to lives their best lives despite challenges. 

    To listen to the individual stories of these teen warriors, their parents, and their siblings, click here

  3. Boston School District Finally Recognizes Sickle Cell Disease as Impeding a Student’s Education

    February 13, 2018 by Andrea


    Last week, the Boston Globe reported that the Boston, Massachusetts public school system has officially decided to recognize sickle cell disease as a disability that can affect a child's education. For a condition that has been known to exist for more than 100 years, this is long overdue.

    Because of the occurrence of crises, hospitalizations, and other complications that can arise with sickle cell warriors, students are often forced to miss classes -- upwards of 20-30 days, according to a 2006 study. And as recently as 2016, the journal article "School Performance and Disease Interference in Adolescents with Sickle Cell Disease" confirmed that "missing school can have [a] significant impact on educational attainment in adolescents with SCD; attainment is measured through grade retention, special education rates, and letter grades." The article goes on to say, "Difficulties associated with missed instruction are further complicated by subject matter that builds on previous knowledge such as mathematics and foreign languages. Additionally, adolescents may miss exams and standardized tests."

    For these very reasons, the Center for Law and Education, along with the Massachusetts Law Reform Institute, filed a complaint against the Boston school system back in 2015, the Globe reports. This lead to a series of adjustments in school policy and ultimately to the official recognition as stated earlier. According to the Globe, the school system has also created a Sickle Cell Advisory Group.

    Every school district in this country can look to Boston as an example of how to reform its own policies addressing students with disabilities, so all students do indeed receive a "free and appropriate" education. Does your local school district recognize SCD as a disability that can inhibit a student's education? Tweet us @XickleRBC and let us know!

  4. How Jordin Sparks and Family are Turning Grief into Action After Sickle Cell Loss

    February 5, 2018 by Andrea
    Jordin Sparks step-sister Bryanna

    Photo: GoFundMe

    While it is more typical in this day and age for sickle cell warriors to live well into adulthood -- some into their 90s even! -- complications can still arise that don't allow for that to happen. Just last week, singer and American Idol alum Jordin Sparks first took to Instagram asking for prayers for her step-sister. "Please keep my little sister, Bryanna, in your prayers," she wrote. "She's suffering from complications from sickle cell and is in the ICU fighting for her life." Later, she confirmed that her sister had passed.

    To celebrate Bryanna's life, the family has created a GoFundMe, so in lieu of sending flowers, people can donate to help raise awareness of SCD, provide assistance with medial bills of other warriors, and establish a "Bry's Corner" in hospitals around the country, so patients can have a "fun space" to spend time in during hospital stays.

    The fact that some warriors still don't get a chance to live to adulthood confirms what we've already known even further -- much more research and resources are needed to discover a cure and to help extend the lives of all warriors until a cure is found.

    According to WHAS11, an ABC affiliate out of Louisville, Kentucky, doctors at the city's Norton Children's Hospital are working to do just that. They've created a transition program to help teens and young adults be much more prepared for aging out of pediatrics and into adult care. "We try to practice with them, speaking up, asking questions, making [their] own appointments," clinical social worker Spencer Moorman tells the news station.

    Currently, the adults and teens in this new program attend monthly support meetings to help them stay on top of their health as they move through the process, ultimately becoming solely responsible for their care.

    Programs like this one are a good start, but we still have a long way to go.

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