There are several great ways to connect with other rare disease advocates and become involved in advocacy! For this article, I’m going to focus on blogging.

My advocacy work started with my blog, “Learning to Live by Defying the Odds.” My blog is about my experiences living with Gardner syndrome, a hereditary colon cancer disease. Shortly after I started blogging, I started to look for any type of support resources for people who have my disease. A few years ago, I conducted a similar search and found hardly anything. But since then, social media and online support groups have become more popular. I even found a foundation that had recently been started for people who have my disease!

As I started to blog more, I looked for ways to build my audience. I started out with others who had my disease. I posted my blog anywhere that I could in support groups. I started to notice that many people were doing blogs or other things to raise awareness for hereditary colon cancer diseases! That was when I connected with the Familial Adenomatous Polyposis Foundation. They provide resources for patients, families, doctors, caregivers and anyone else who has had their life impacted by a hereditary colon cancer disease. Before I knew it, I was offered an internship at the foundation. This internship recently turned into an even bigger opportunity, a place on the board of directors!

It’s amazing to look back on my experiences and see that my small blog has lead me down this path of advocacy work. For those of you who are thinking about blogging, I encourage you to try it! When you blog, you choose what and how much you disclose about your experience. For some, writing about an experience can help with coping. From my experience, I have found writing to be empowering and really fun!

Here are some tips for stating a blog about a rare disease:

  • Choose your message: Will your blog be about personal experiences? Will you raise awareness for a disease? Will you be writing opinion posts on the latest rare disease news? Whichever you choose, you’ll be raising awareness!
  • Research different blogging sites: Each blog site has its own pros and cons. It’s best to do some research and decide what works best for you!
  • Look for similar blogs: Are you blogging about a particular disease? See if there are other blogs about your disease. Perhaps an even bigger advocacy opportunity could come from connecting with other bloggers who share similar rare diseases?
  • Build an audience: Post a link to your blog on other sites related to the disease(s) that you write about. If you’re social media savvy, share your posts on Twitter or Facebook! With social media today, it is easier to connect with other rare disease patients and advocates!
  • Posts: What types of things will you post to your blog? Will it just be text? Or will you include pictures of your rare disease journey or advocacy efforts?
  • Title: Make a title for your blog. For me, I tried to summarize my experiences into a phrase. I see my rare disease experience as a defying the odds and as I have defied my disease, I have learned to live. That was how “Learning to Live by Defying the Odds” began.
  • Design your blog: Now it’s time to design your blog! If you know HTML or CSS, you can make your blog customized! On some blogging websites, customizing design templates isn’t free. Make sure to keep this in mind when you choose a blogging site.
  • Post: Now the time has come for your first post? What will you write about? Will you introduce yourself and the reason behind your blog? Will you write a post about your latest treatment? Or write something about the biggest lesson your rare disease experience has taught you? Whichever you choose, you’ll want to grab the attention of your intended audience. Make your first post memorable.

Happy blogging!

About the Author

Alyssa Zeigler is a recent graduate from Western Washington University. She has Gardner 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. She is currently working towards becoming a certified child life specialist and is on the board of directors at the Familial Adenomatous Polyposis Foundation. In her free time, she likes photography, knitting, playing the ukulele, 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 “Rare Blogging”

  1. heather says:

    Very nice! 🙂

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