097 – A life of Ehlers-Danlos Advocacy – Lara Bloom

We are often surprised by the twists and turns of life – especially when confronted with disability or a rare disease like Ehlers-Danlos Syndrome (EDS).  

CEO Ehlers Danlos Society

Lara Bloom was surprised when she was diagnosed with Ehlers-Danlos Syndrome – a disease that causes complications with her connective tissue.  She was even more surprised to meet a man who helped her find her purpose – launching The Ehlers-Danlos Society.

Lara is president and CEO of The Ehlers Danlos Society and she is a global leader in the rare disease community.

Lara has taken life’s twists and surprises and turned them into a beautiful life of service to others.

Join us for laughter, and a conversation about what it means to build and sustain a life of advocacy.

Lara’s Documentary about her participation in the London Marathon: Issues With My Tissues.

Connect with Lara: https://www.larabloom.com/

If you liked this episode you might like to hear from another Rare Disease leader – 006 – Nicole Boice.

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