“Reframing Rare” for Rare Disease Day 2020: Rachel Callander
To celebrate Rare Disease Day 2020 (29 February), Takeda launched the “Constellation of Rare Stars” campaign to shine a light on some of the many individuals who have had a global impact on rare diseases. Through this campaign, we share the remarkable stories of 29 patients, families, caregivers, healthcare professionals and community members who are helping to “Reframe Rare”.
Rare is strong. Rare is proud. Rare is many. Here we’d like to tell you the story of one of our “Rare Stars” – Rachel Callander, who is a speaker, author, trainer, artist, patient experience advocate, and previously mum to a child with a rare disease.
“What is so moving about Rachel’s story is not about how close to death she’s come, it’s how close to life.” Despite the loss of her daughter Evie – who was born in 2008 with the rare chromosomal condition, Partial Trisomy 9 and Partial Monosomy 6 – it’s still one of the most accurate descriptions of Rachel’s life and her many achievements.
Rachel used to call, and still calls, Evie her Super Power Baby. It’s because of her unique response to particular environments, as if Evie was experiencing things differently. “She would cry when she went through electric sliding doors or when we drove on roads where there were large electrical pylons,” Rachel explained to The Huffington Post. “It was as if she had an electromagnetic sensitivity that was unique to her.”
This experience inspired Rachel’s photographic art books Super Power Baby Project and Super Power Kids, which feature striking photographic portraits of children with chromosomal and genetic conditions. In a world where disabilities are frequently associated with negative terms, Rachel wanted to encourage parents to discuss their kids’ conditions in a positive light.
These two books feature over 100 case studies of families living with a rare disease, and have won Rachel a number of awards, including the international ‘Outstanding Book of the Year Award’ for Independent Spirit and the ‘Making a Difference Award’ at the 2015 Attitude Awards. Over the years Rachel has also been “reframing rare” by delivering keynotes and workshops around the world (including this TEDx talk) to help create a culture of inclusion, acceptance and tolerance, and in particular, empower healthcare professionals to have positive, open communications with patients.
To learn more about Rachel’s incredible story, visit her website: http://www.rachelcallander.co/