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    What is the purpose of raising awareness of rare diseases?

    A few days ago, someone asked me a question. That question was, “Why do you want to raise awareness for rare disorders? Like, how is it going to benefit the patients?” First let’s start off with answering the question, “What does it mean to raise awareness?” According to the dictionary definition, awareness means the state of knowing or to be familiar with something. We raise awareness to bring knowledge of something unknown to others. By doing so, many more people are aware of the problem in hand and work to fix it. I started this blog to raise awareness of rare disorders. Rare disorders are, well, rare. There are uncommon and unheard of, therefore when patients get diagnosed with a rare disorder or disease, it’s extremely scary. Raising awareness for rare disorders actually does many things.

    1. It introduces others to rare disorders that are practically unheard of and it educates them.

    2. By spreading the word, we also increase chances of doctors being able to diagnose a rare disorder easier and faster (rare disease patients sometimes go many, many years with a wrong diagnosis or no diagnosis at all.)

    3. Spreading awareness also raises funds which can help with research in order to find a cure for some rare diseases.

      - If they cannot find a cure, research funds can be raised in order to make a rare disease patient’s life much easier.
    4. By educating others, we can stop exclusion. If people know of these rare diseases and why it makes someone different than others, the act of inclusion will increase, not only in schools, but also in public areas such as work places, etc.

    Raising awareness for these rare diseases can change so many family’s lives. You all have no idea how many times I have been told by a family or patient that their doctors initially had no idea what disease they have and they go undiagnosed or are diagnosed with the wrong thing. It’s a scary thing. I started this blog to raise awareness, meaning to raise funds, increase inclusion in public environments, find cures, inform and educate others, etc. Just by spreading this blog, you can truly change one’s life. There may be someone out there with Cutis Laxa Type 3 or Cardiofaciocutaneous Syndrome that need to connect with someone else with the same exact disorder. Rare disease patients need a voice, and I truly hope to be that voice for them. You can help make a difference.

     

    - Anisha Yellamraju

     

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