LARA BLOOM

President & CEO:

The Ehlers-Danlos Society

Patient Engagement & Advocacy Expert

for Rare, Chronic & Invisible Conditions

Public Speaker & Campaigner

  • Facebook
  • Twitter
  • YouTube
  • Instagram
Subscribe to Vlog

Subscribe to my YouTube Channel for monthly Vlog updates.

 

Follow my journey advocating and representing the patient voice in rare and invisible diseases worldwide, as well as gaining an insight into my personal experience as a patient.

© 2019 Lara Bloom

I am Number 17: Rare Disease Campaign

"Who am I? I am the one in 17 people in the UK affected by a rare disease at some point in their life. I could be on my way to yet another appointment with a perplexed doctor, or just back from a world record attempt. I could be the parent of a child with a rare disease, learning to deal with the complexities of my child’s condition. Or I could have the most perfectly blended eyeshadow, which I nailed despite my arms being too weak to raise more than an inch.


"I might have tuberous sclerosis, hereditary angioedema, Ehlers-Danlos syndrome, or any one of a myriad of conditions you’ve probably not heard of. Don’t worry, hardly anybody’s heard of my condition. I might have a rare disease or one that is extraordinarily rare. Whilst my experience gets shared with my family and friends and people similar to me, it’s not been shared much beyond that."


I am Number 17 is a new campaign to help the voices of those with rare disease, be heard. 17 "Changemakers" living with different rare disease took part in the campaign, each paired with an artist to tell their story. President and CEO of The Ehlers-Danlos Society, Lara Bloom, is delighted to be part of this campaign, paired with photographer Ross Ferguson.

For more information go to: https://iamnumber17.geneticalliance.org.uk/