098 – Lipodystrophy and the Pharma/Patient Relationship -Andra Stratton

February 17, 2020 twodisableddudes 1 comment

Andra Stratton was diagnosed with a rare disease called Lipodystrophy that makes her look very athletic and fit due to her lack of adipose tissue. Appearance is deceiving in this case because Lipodystrophy often causes organ failure and sudden death.

The diagnosis was tough but when Andra met others living with Lipodystrophy she felt at home and never looked back.  She soon found the greater rare disease community and has become a leader in Lipodystrophy and in the rare disease community.

Andra was recently nominated for a patient advocacy award and invited Kyle to go with her to the awards dinner. They had a “unique experience to say the least.

The Pharma industry has made progress in their focus on the patient but we all have a long way to go. Listen to find out why…

Connect with Andra on Twitter: https://twitter.com/livinlavidalopo

Connect with Andra on Linkedin: https://www.linkedin.com/in/andrastratton/

Lipodystrophy United: http://www.lipodystrophyunited.org/

Listen to the Rare in Common Podcast: rareincommon.com

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