Resources
A growing collection of books, articles, and organizations I’ve found helpful in my work with - and life as - a parent of a child with a rare genetic disorder and all the things that come with it.....
Organizations
- National Organization for Rare Disorders (NORD)- patient assistance programs, advocacy, and a database of 1,200+ rare disease reports.
- Global Genes- toolkits, community forums (RARE Concierge), and educational resources for rare disease families.
- Raregivers- mental health support and community specifically for caregivers of children with rare diseases.
- Courageous Parents Network- videos, podcasts, and guided support for parents caring for children with serious illness.
- National Alliance for Children’s Hospice & Palliative Care- directory of pediatric palliative care providers and family resources.
- Family Voices- family-led network supporting families of children with special health care needs.
- Center for Parent Information & Resources- hub of Parent Training and Information Centers for navigating IEPs, disability rights, and services.
- NIH Genetic and Rare Diseases Information Center (GARD)- free information specialists and trusted clinical information on rare conditions.
- Rare Disease Diversity Coalition (RDDC)- addressing the disproportionate burden of rare diseases on historically marginalized populations through advocacy, research, and community.
Community & Peer Support
- My Child Without Limits- support community for parents of young children with developmental delays and disabilities.
- Smart Patients- online communities organized by condition, including many rare disease groups.
- Inspire- patient and caregiver support communities for hundreds of health conditions.
Books & Reading
- How to Handle More Than You Can Handleby Amanda Griffith-Atkins, MFT.
- Self-Compassion: The Proven Power of Being Kind to Yourselfby Kristin Neff.
- Your Kid Belongs Here- An Insider's Guide to Parenting Neurodiverse Children by Katie Rose Guest Pryal.
- Far From the Tree by Andrew Solomon - on parenting children whose identities differ from their parents’.
- The Boy Who Loved Too Much by Jennifer Latson - a family’s story of raising a child with Williams syndrome.
- The Transgender Childby Stephanie Brill and Rachel Pepper - a handbook for families and professionals supporting transgender and nonbinary children.
- The Gender Creative Childby Diane Ehrensaft - pathways for nurturing and supporting children who live outside gender boxes.
- Parenting at the Intersections: Raising Neurodivergent Children of Coloredited by Bayo Akomolafe, Jaya Ramesh, and Priya Saaral - a collection centering the experiences of parenting neurodivergent children of color.
Podcasts
- This Rare Life- stories and conversations about life with rare disease.
- Full Tilt Parenting- support for parents navigating complex caregiving and special needs.
- The Regulated Parent- nervous system regulation and emotional resilience for parents.
- On the Hard Days- honest conversations for parents of children with disabilities and special needs.
- Once Upon a Gene- hosted by Effie Parks, exploring the emotional and practical realities of raising children with rare genetic disorders.
- Raising Rare- co-hosted by a parent of a child with a unique genetic variant, highlighting voices from the rare disease community.
- Rare Mamas Rising- hosted by Nikki McIntosh, for mothers navigating a child’s rare diagnosis with empowerment and sisterhood.
- Strong and Rare Parenting- hosted by Victoria, a special needs mother of two, covering Autism, ADHD, and rare diseases to empower caregivers.
- Camp Wild Heart- hosted by clinical social worker Mackenzie Dunham, exploring internalized transphobia, identity development, and affirming family dynamics with experts and trans adults. Available on Apple Podcasts.
- Talking Transgender- hosted by a licensed clinical social worker and parent of a transgender child, focused on learning to accept and advocate for your child.
- Lift + Love (Episode 69 - Parenting Trans Kids)- a conversation on processing your emotions as a parent, navigating family pushback, and understanding gender-affirming care data.
- Autism in Black Podcast- hosted by Maria Davis-Pierre, LMHC, focusing on the Black parent experience in the special needs and disability community, including advocacy, medical stigma, and building support systems.
Guidebooks
- Raregivers Emotional Journey Map Guidebook- a guide for caregivers navigating the emotional journey of rare disease.