Shannon Burkoth,

Professional Rare Disease Advocate

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Why Rare Disease?

With a successful career managing the clinical auxiliary staff of a 77 chair dental clinic, becoming a mother, and then an energizing career in real estate, life was full, and then it wasn’t. After several years of misdiagnosis and failing health, I was diagnosed with a rare disease. After failed treatment options, I became disabled at the age of 34. I would spend the next 5 years grieving the loss of the ambitious person I once was. I was tired of feeling depressed and playing the victim. In 2015, I discovered advocacy. I found my new passion and it was liberating. I decided it was time to fight, not just for myself, but for all who enter the arena of rare disease, not by choice, but by fate.

"I will raise awareness and fight for the patient voice to be heard. I will work alongside all stakeholders to improve quality of life, to encourage new research for treatments, and ultimately cures."

What people say...

— Dawn Ireland, World Leader in Congenital Diaphramatic Hernia advocacy

"Shannon's ambition and positive attitude to do good in the rare community is infectious. She is outgoing, compassionate, a strong public speaker and a passionate advocate for the whole rare community."

shannon@shannonburkoth.com

262.496.9877

shannonburkoth.com

  • There are over 7000 Rare Diseases

  • Less than 5% have any treatment

  • Zero have cures

  • Rare Disease affects one in ten people in the US, that equates to 30 million people! 

               SKILLS:

  • Public Speaking

  • Professional Rare Disease Advocate

  • Narcolepsy Advocate

  • Public Relations

  • Blogging

  • Social Media

  • Fundraising

  • Event Planning

   AFFILIATIONS:

  • Rare Advocacy Movement

  • Rising Voices of Narcolepsy

  • Narcolepsy Network

  • Project-Sleep

  • Global Genes

Visit my linked In page to access my advocacy publications and ventures.

Recent Events and contributions:

  • Rare Revolution Magazine, 2019 Contributed 1st ever story about living with narcolepsy for this magazine, in their Rare Families edition.

  • Neuro Trials Research, 2019 Keynote speaker for a one day conference "Understanding Narcolepsy in 2019 and Beyond.

  • Harmony Biosciences, 2019 Keynote speaker for the company release of Wakix, a new FDA approved Drug for the treatment of narcolepsy. 

  • Harmony Biosciences, 2019 Participated on grant

          

            Review Committee as the patient voice.  

  • Cystinosis Family Meet Up, 2018 Help facilitate one day conference for the cystinosis community in Charleston, SC.

  • Project Sleep Narcolepsy Awareness Video Series,  

       

        2018 Participated in a video documentary series filming my story,                       group conversations on relationships and breaking down stigmas related               to narcolepsy. 

  • Narcolepsy Network Conference, 2018 Led breakout sessions on Parenting with Narcolepsy and Support Group for newly           diagnosed.

              

  • Expanded & Managed Access Programmes, London

 

         2018, Participated on patient panel

  • World Orphan Drug Congress USA, 2018 Hosted Round table discussion on strengthening patient centricity in research. Presented White paper on same topic from Rare Advocacy Movement and Covance. 

  • Sleep Awareness Week, 2018 Hosted Pajama Party in my home town to raise awareness for sleep and sleep disorders. Social Media Blast and Local News coverage on event.   

  • Nursing School Engagements, 2018 Invited to speak at local nursing school to raise awareness on Narcolepsy, cataplexy, sleep health and rare disease.

  • Thrive Global Published article entitled "Rare Advocacy is my drug of choice, and I am addicted" 

  • Lift Us Up Campaign, recorded video p.s.a. segment "you would call me delirious" to debunk myths on hypnogogic hallucinations related to narcolepsy. 

  • *click on titles to see related media for each contribution        

Topics of engagement may include but not limited to the following...

  1. Patient centricity in research

  2. The value of working with Patient Advocacy Groups and leaders

  3. The Patient perspective in healthcare

  4. Living well with a rare disease 

  5. Overcoming stigmas and raising awareness for narcolepsy

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