Joining The Global Genes Project as The Rare Blog’s Managing Editor

I’ve been SO excited to share this news and now I finally can! I’m starting work with The Global Genes Project tomorrow and I am outrageously excited to get started.

My mom found Global Genes while researching for her Lifetime show, Behind The Mystery: Rare and Genetic. I loved the site and even submitted my infamous blog post about Parking Near Assholes to their Rare Blog. I also had the chance to meet Nicole Boice at the studio when she came down to Florida to shoot the segment.

That is also when she gave me my very cool Hope hat.

I’m going to be acting as their Managing Editor for The Rare Blog and I feel like I’m sitting here with a lasso in each hand ready to wrangle in writers to share their stories.

I really have a lot of respect for this organization and the people that work the long hours it takes to run it. Their goals are to strike awareness into the hearts of patients, policy makers and the general public. With over 7,000 rare diseases and 1 in every 10 Americans suffering from a rare disease, they’ve really filled a void in the structure of support for parents and patients. With some diseases having fewer than 100 current patients the initiative to band together as one community has been an invaluable resource in the fight to fund innovations in research, and empower the community.

The reason I created Lets Feel Better was to help me reach out to patients who had been there before me, and to those that would be there after me. Living life with a rare and chronic illness can be scary and it can be difficult–but there’s no reason it ever has to be lonely. This is not a disease I suffer through alone and I’m proud to be part of the fabric of technology that can truly bring people the feeling of friendship and understanding during what is most often the most challenging time in their lives. And I am so grateful that The Global Genes Project is allowing me to be a part of their mission!

I’ll be spending the next few weeks getting up to speed and working with their fantastic team to implement new ideas and bring on more content. I’ll be around with updates on how readers can get involved very soon!

 

Comments

comments

22 thoughts on “Joining The Global Genes Project as The Rare Blog’s Managing Editor

  1. Congratulations, Ilana! Please allow me to introduce myself. I’m Kevin Alexander, and I’ve contributed to the Rare Blog a few times over the last year. I have PKU, a rare metabolic disease in which the body cannot metabolize protein. I’m a filmmaker and produced a short film about living with the disease. (www.youtube.com/creativecontrolfilms).

    Please send me an email. I’d love to chat with you and brainstorm about some possibilities for future posts!

    Kevin Alexander

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