"It means so much to have a voice, so don't underestimate how important these articles are."
We are passionate about bringing you our online magazine, #RarityLife, and enjoy the process of producing each edition. To allow us to share features more often, we have created a brand new #RarityLifeinFOCUS page
Your Condition Doesn’t Define You - But It Will Shape You - In conversation with Oliver Bromley
Oliver shares how a recent experience of discrimination set him on a journey towards becoming an advocate for people with visible differences. Through sharing his story publicly, and talking about how his condition Neurofibromatosis type 1 has shaped his life, he has been able to share his message widely, that we should all strive to “fill the world with love and be kind.”
It’s Not Perfect - In conversation with Yvonne Diaz
Yvonne shares her journey from an unexpected IV ALK+ lung cancer diagnosis to finding effective targeted therapy. She describes how she has had to learn to embrace a new normal, a life lived with cancer. We explore what drove her to co-found Oncogene Cancer Research, whose mission is to advocate, educate, and empower others facing oncogene-driven cancers.
Taking it a Day at a Time - In conversation with Keisha and Laura
Keisha and her mum Laura have been through a lot in recent years - missed diagnoses, a life-saving bone marrow transplant, and a long recovery. Now rebuilding life together with their family, they talk to us about focussing on hope, finding strength where they can and taking each day as it comes.
Is Anyone Else out There? - In conversation with Vanessa O'Rourke
Vanessa shares both her long and difficult journey to an Addison’s disease diagnosis, and how this led her to become a powerful advocate in the community, sharing her story to support others and to show them that they’re truly not alone.