Resources

Podcasts

Once Upon A Gene

Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.

Rare Mamas Rising

Rare Mamas Rising is a podcast for mothers of children with rare diseases to find strategies, strength, support, and sisterhood! Hosted by Nikki McIntosh, each episode offers heartfelt reflections, practical tools, and empowering strategies to help you rise to the call of rare disease parenting.

Coffee with Caregivers

Join Jess Ronne, author, speaker, and caregiver advocate as she chats with caregivers about the joys and trials of raising a child with complex needs.

Behind the Genes

From the latest research to the lived experiences of those affected by rare conditions and cancer, Behind the Genes brings you closer to the people behind the science. Each month, the team release a deep-dive episode, alongside the Genomics 101 series – short explainers designed to make complex terms in genetics and genomics easier to understand.

Books

Special by Melanie Dimmitt

Special is an uplifting, candid companion for those in the early stages of navigating a child’s disability, offering honest, reassuring and relatable insight into a largely unknown (and so, initially terrifying) part of our world. It features antidotes to the obsessions at the forefront of a newly minted disability parent’s mind: Why has this happened to me? Will I ever stop comparing my child to typical children? How will my relationship survive? Will I be able to work again? Should I have another baby? And the big one: What will my future look like?

Day by Day: Emotional Wellbeing in Parents of Disabled Children by Joanna Griffin

The impact of finding out your child is disabled can be wide ranging. The author’s experience as a psychologist and parent of a disabled child informs this book which focuses on what helps, and hinders, parent-carers’ emotional wellbeing. Research shows that mental health, relationships, family life, access to work and leisure activities, as well as finances can all be affected. For many parents the focus of those around them is solely on the child and their own needs become neglected. The author re-focuses attention onto the wellbeing of the parent. This includes acknowledging emotions, connecting with positive others, empowering yourself, regularly engaging in self-care and finding your own sense of meaning and purpose in life.

The Abilities In Me series by Gemma Keir

The abilities in me is a non profit book series which is written by Gemma Keir and illustrated by Adam Walker-Parker. All profits go in to The Abilities In Me Foundation who donate books into hospitals, run free inclusive workshops, run family days out and support events with a sensory station. Perfect for teachers, parents and children alike, this book series brings awareness of the many conditions children have in this world and our aim is to teach children how to be supportive and be kind.

Little Red Book by Unique

Unique was founded when five families affected by rare chromosome disorders came together to share their stories. Each family contributed to a Little Red Book, passing it along to the next to build a shared narrative of hope, resilience, and connection. Now, 40 years later, they’ve worked with their incredible members to create a brand-new digital version of the Little Red Book. It’s filled with real-life stories and personal experiences from people around the world living with rare chromosome and gene disorders.