Saturday, April 7, 2018

Connect, Collaborate, and Raise Awareness

         Awareness is everything for Rare Diseases. Because there are people like you who may be dealing with the same diagnosis, connecting with others is very important to know you are not alone through the journey. 


      There are many questions that arise with having a new diagnosis or rare condition. Understanding a diagnosis can be difficult and overwhelming. Many experts believe that people can find strength through support groups for example. Support groups give you a chance to share your thoughts, feelings, concerns, and experiences with others who have faced or are facing the same challenges. Connecting with others won't make the problem go away, but it can be comforting to know you aren't alone through the journey. Even when you are around the people you care about, you may feel that they don't understand what you are going through. That is perfectly okay to experience these feelings after a diagnosis.


        There is a need for rare disease research everyday. Today in the world, technology allows us to collaborate with others globally to share possible new medications or therapies that have been discovered in another state or country. It is important that no matter the condition, research can be shared to help find a solution for a diagnosis. Collaboration can help medical professionals and patients with rare diseases to face their challenges.  

                                         RAISE AWARENESS

       Rare diseases can affect patients, their families and society. If everyone with rare diseases lived in the same country, it would be the third worlds most populous country. According to the National Institute of Health, there are about 7000 rare diseases that affect 30 million people alone in the United States. You can help raise awareness by spreading hope. Your story can inspire someone and just might be the story that someone needs to hear. Social media is very powerful and can reach so many people with a simple hashtag or tweet. Awareness for your diagnosis is important and with awareness brings better education and light to the condition. Keep fighting, keep advocating, make a difference, inspire others, and never give up. 

Many diseases go undiagnosed and there is no cure for the majority of rare diseases. The world is in our hands to advocate and make a difference. Connecting, collaborating, and raising awareness can move mountains. A good story inspires movement, so lets be unstoppable!

-Angela, Blount's Disease Strong 

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