Have you ever wanted to become an advocate for rare diseases? Whether you’re advocating for one disease or all 7,000 rare diseases, you can make a difference!

Rare disease advocacy is important for many reasons. Not only are there over 7,000 rare diseases, 80 percent are related to genetic mutations and 50 percent of those living with a rare disease are children. One in ten people living in the United States has a rare disease– rare is not so “rare” anymore.

So where do we begin? Advocacy is such a broad area. But that is the best part because we can be creative and do just about anything to raise awareness! Here are a few tips to help you get started:

  • Writing: Whether you choose to write a blog, memoir or even an article about a rare disease, you’re raising awareness!
  • Become a Guest Blogger at Global Genes: Do you have experiences with a rare disease? Consider writing articles for Global Genes and meet other writers who share the same passion for advocacy as you do.
  • Collaboration: Meet others who also want to raise awareness for your rare disease. Everyone will have something unique to offer towards the awareness raising efforts of the group.
  • Create Something: Maybe your disease doesn’t have a foundation or maybe you just want to raise awareness for rare diseases in general. Whether you’re an artist, athlete or writer– you can make a difference!

About the Author

Alyssa Zeigler is a recent college graduate from Western Washington University. She has Gardner’s syndrome and comes from a family that has a history of hereditary colon cancer diseases. She has a degree in psychology and hopes to help people who are living with rare diseases. In her free time, she likes photography, knitting, spending time with friends and writing. Alyssa is the author of the memoir, The Waves of Life: Going Against the Tide and the blog Learning to Live by Defying the Odds, and the creator of rareACTION.

1 thought on “Becoming an Advocate”

  1. Tracey Gehrke says:

    Hi, My name is Tracey i’mm 44 yrs old and was diagnosed with Craniofacial Fibrous Dysplasia in 2012.
    Being a member of different groups relating to Fibrous Dysplasia/MAS and being a support to other sufferers amoung these groups made me think that more needs to be done to raise awareness in the hope of finding a cure! so i started to Raise Awareness the only ways i new how. I purchased Tshirts for fibrous Dysplasia/MAS and started wearing them but this wasnt enough, I had good talent going to waste so i asked a few other sufferers to be a part of an Awareness video that i made in the hope not only to Raise Awareness but to hopefully one day a Cure is found! so here is my Awareness video its not only on the FD/MAS facebook groups its also on Youtube and Twitter to help spread the word! I would also like to become an Advocate for Fibrous Dysplasia/MAS to really shine and raise even more awarenes. i hope you enjoy!
    https://www.youtube.com/watch?v=Of-4ju_dkD8&t=103s

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