55/365- Happy Rare Disease day

The day has come – Friday the 28th is international Rare Disease day and people all over the world are meeting to discuss, fundraise and raise awareness about conditions like myasthenia gravis.

Today, it’s going to be difficult for me to engage in any of the events as I’m going to be working from home and then flying to Copenhagen for my birthday weekend. However, I’ll be looking for ways to raise awareness online. I also shared my story on the Rare Disease homepage, which you can do to. I’m just waiting to see if it gets approved.

I’ve tried to do my bit through this blog and also by sending a couple of stories to national and local press about people living with myasthenia gravis. Sadly, there has been no pick up so far but I’m hoping we will still be able to get the stories printed without the rare disease angle. These women are not only inspirational but their stories would raise awareness about the younger generation of people with myasthenia gravis. They have also been very brave in sharing their stories with me and I want to do them justice by getting them printed.

Lessons learned

I’ve learned a few valuable lessons about the way to approach getting media coverage in future.

Time: Although I am a qualified journalist, I forgot the amount of time required to get stories into the press. I also didn’t give myself enough time to chase them up properly, which is what I often needed as a reporter to get a story in print. 

Content: I wrote the women’s stories as articles rather than press releases because that’s what I’m familiar with. However, I forgot what it’s like to work in a manic newsroom – press releases are easy to deal with as you are used to turning them into stories. Pre-written articles are no doubt more problematic. I thought I was making it easier but in fact I’ve probably just confused them.

Support: As my new job is ramping up, I was very short on time to write and send the stories out to the media. This is when I should have asked for support from Myaware. Instead, I’ve asked for it too late. I’m hoping I’ll be able to get the staff there to help turn these stories into press releases and get them some well deserved coverage. 

Anyway, they are all valuable lessons to learn and hopefully it’ll be easier to get press coverage in future. 

Happy Rare Disease day everybody – let me know in the comments if you are celebrating!

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