• Shannon Burkoth

Global Genes 5th Annual Rare Disease Advocacy Summit


I had the honor of attending Global Genes Rare Patient Advocacy Summit this past September and it was inspiring! I first became familiar with GG at their Narcolepsy Meet Up Tour in Chicago this past July, where I was invited and encouraged to attend this summit. Because the Meet Up Tour was so successful, I decided to travel to California for this event as well, and I am glad I did!

There are over 7000 Rare diseases most of which have little to no treatment available, including narcolepsy. There were over 600 people from around the globe who attended this event. I met the CEO for GeneFo, a facebook kind of social media directory for people like us. I met Doctors who are passionate about finding treatment and cures. I met other people with different rare diseases, parents of children with rare diseases, all struggling as we are, to find answers and cures to better our quality of life and the lives of our children. “We may be rare, but together we are strong”, I’m not sure who said it, but in that conference hall I felt it!

The breakout sessions covered several topics on advocating/educating, gene sequencing, data sharing, engaging your community, support groups, social media tools, how to engage your senators, the process of clinical trials and so much more. The keynote speakers were amazing and engaging. I was in the presence of other warriors, battling the same system to make it better and they/we are making a difference!

As a person with Narcolepsy and cataplexy, along with a number of other diseases/disorders, I struggle. I’ve been struggling for the past 6 years, since giving in to being disabled as many of us have, to find my identity in this new distorted version of me. After leaving this conference, I felt empowered, empowered to make a difference not only for myself and the Narcoleptic community, but to engage with other people of rare disease, to work together, support eachother, network and raise our voices for better futures for all of us.

I want to personally say thankyou to Global Genes and their awesome staff for putting this summit together. I want to personally thank the Narcolepsy Network for educating me when I was first diagnosed, as my doctor simply handed me your brochure and encouraged me to look to you for answers because he had none. Thankyou for your collaboration together for the meet ups this past year and for the new tool kits you have put together to help all of us. Your support, advocacy and encouragement are a blessing, I am truly humbled by your passion for rare!

#NarcolepsyNetwork #narcolepsy #RareDisease #GlobalGenes

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