rarediseaseawareness

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    It is difficult to define what constitutes a “rare disease” because the definition varies broadly, usually by country or region. In general, a rare disease is any disease that affects a very small percentage of a given population. An estimated 72% of rare diseases are genetic, or congenital, frequently affecting people throughout their lives (rarediseaseday.org); many of these diseases present at birth or in infancy and an estimated 30% of children with rare diseases will not live to see their fifth birthday (SIOP Europe). It is estimated that between 3.5-5.9% of the world population will be affected by a rare disease during the course of their lives (rarediseaseday.org). Rare diseases are usually chronic, disabling, progressive and degenerative, as well as frequently life-threatening: Furthermore, the very nature of rare disease is isolating, necessarily. Rare Disease Day and its backing organizations aim to acknowledge these points as realities by addressing them on the global stage: By doing this, people fighting the same rare diseases can be brought together from diverse geopolitical backgrounds to fight toward empowerment and equity as a unified and powerful force.

    Rare Disease Awareness Day is integral not only for raising awareness about rare diseases but also for bringing all of humanity together for the improvement of hundreds of millions of lives. I personally struggle with several potentially life-threatening rare diseases and I agree very much with NORD that although we are “rare alone,” we are an unstoppable force when we all work together. You can find much more information about Rare Disease Awareness Month and Rare Disease Day by visiting rarediseaseday.org. You can also visit NORD at rarediseases.org to find additional resources including a searchable rare disease database. Information about the 16 aforementioned “Rare Disease Community Heroes” is also featured on the Rare Disease Day website where you can also find remote or local events leading up to and on Rare Disease Day. This website features an immense array of resources, including information regarding the 2030 UN Rare Disease Health Initiative and even information about how the public and private sectors as well as individuals can light their buildings and homes on February 28 to show their own colors and join together in both strength and solidarity in this important global movement.

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    “Alone we are rare. Together we are strong. ” This is the trademark for the National Organization for Rare Disorders, Inc. (NORD), US Sponsor of International Rare Disease Day. NORD is one of over 66 National Alliances (rare disease patient advocacy organizations) representing over 100 countries and regions all over the world, referred to as “Rare Disease Day Partners.” The month of February was designated “Rare Disease Awareness Month” by the European advocacy group “EURODIS” in 2008; that year, the first International Rare Disease Day was held on February 29. EURODIS acts as the central coordinator among the “Rare Disease Day Partners,” patients with rare diseases, and the global community at large to create unified messages and visual materials to raise awareness for rare diseases and the individuals who live with them. “Rare Disease Day” is a recognized day created to bring awareness and subsequent empowerment, community, and equity to over 300 million people worldwide fighting any of approximately 6,000 known rare diseases. This February marks the 15th “Rare Disease Awareness Month,” and February 28 will be the 15th annual “Rare Disease Day.” Ultimately, the objectives of Rare Disease Day are to ensure equal access to treatment and healthcare, to create more equitable social opportunities for those fighting rare diseases (higher education, jobs, etc.), and to simultaneously reduce stigmatization through social inclusion. Furthermore, through raising awareness, EURODIS and its Rare Disease Day Partners aim to find means to fund research for more effective and life-saving therapies as well as to minimize the time it takes to diagnose a person with any given rare disease. 
 
“Rare Disease Day” utilizes the narratives of “real life Rare Disease” “heroes” to identify common challenges faced by those with rare diseases to connect patients as well as their caregivers into a strengthened global community. For 2022, there are 16 “hero” community members from around the world who have agreed to share their stories with the world for the purposes of rare disease advocacy (rarediseadeday.org). Every Rare Disease Day bas a specific “Call to Action;” for 2022, the Call to Action has been named “Share Your Colours;” a means of representing individuals with rare diseases utilizing vibrant colors to express positivity, strength, and diversity of the individuals who make up the 300 million rare disease patients worldwide. By utilizing art and simple creative images, this “Rare Disease Day” will become accessible to many more people throughout the world.

    Please read Part Two!

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    From Autism to Fatal Genetics

    <p>From Autism to Fatal Genetics</p>
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    Handling the Holidays with Rare Diseases

    Big sigh. The Holidays are upon us again. This should be a happy time, I should be looking forward to all the get-togethers to come, so why am I so anxious? It's because I have a genetic immunodeficiency disorder. Being around loved ones can literally make me sick. I also have Vestibular Neuritis, Vestibular Migraines and food allergies, just to name a few.

    This is both my favorite and most miserable time of year. My favorite because it's time to give thanks for our blessing and the birth of our Savior. My most miserable because it coincides with cold and flu season, and surviving dinners made with love, but not with consideration for my severe food allergies.

    It's hard to get family members and friends to understand that the "little bug" they have can lead to a serious infection or even a hospital stay for me. It's hard to get them to understand that too much movement in a room, flashing lights and overstimulation can lead to a flair of vertigo or a migraine. It's hard to get them to understand that the "just a little bit" of dairy in their dish can leave me spending the rest of the day vomiting and miserable. Its harder still to deal with the misconceptions about my conditions, advice on how to cure an incurable disorder, the questions about when I'm going to use my degree and go to work, and my least favorite "you can't really be that sick".

    So how do I handle all these things and still enjoy the Holidays? I don't have the answer to that. My husband and I have come up with a code word so that when I've had all I can handle of insensitive behavior, we leave immediately. I'll take all the precautions I can. I'll get my infusions the week before the Holiday, I'll wash my hands, a lot. I'll wear my mask when I can. I'll make a point to avoid the flashing lights and the most crowded rooms. I'll bite my tongue and nod my head at the comments that shouldn't be made. I'll bring food that I know I can safely eat. Most importantly I'll pray and put my trust in Jesus.
    #primary immunodeficiency disorder #vestibulardisorders #rarediseaseawareness

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