“My full-time unpaid role”: Understanding the (extra)ordinary work of founders of rare disease organisations
An interesting article exploring the work of founders of rare disease organisations. Our CEO and founder, Sara, contributed her own experience as part of this article. Sara founded Alex TLC in 2004, as a small support group from her kitchen. We have since progressed to an internationally recognised centre of excellence and the only UK charity providing support and information to people affected by any of the leukodystrophy conditions worldwide.
To read the article: Rare disease founders
