Library

We've gathered some resources that may be beneficial for Rare Disease Families. Please feel free to browse our resource library and share it with others if you find it helpful.

GENETICS

Learn About Genetics

Discover easy-to-understand materials about how genes and the brain work, and how they relate to SPATA5 and SPATA5L1.

Pedigrees: Autosomal Recessive Inheritance

Alleles & Genes

DNA, Chromosomes, Genes, and Traits

Rare Diseases

Explore trusted resources, guides, and support networks to help families navigate the challenges of rare diseases.

Some people find the Welcome to Holland poem comforting.

Once Upon A Gene Rare Disease Podcast

LISTEN NOW

NORD's State Resource Center

RESOURCES BY STATE

National Organization for Rare Disorders

NORD WEBSITE

Newly Diagnosed Rare Disease Video

WATCH NOW

The Rare Sibling Experience YouTube Video

WATCH NOW

Rare Disease Day Info

RARE DISEASE DAY

Patient Advocacy Resources

Explore our patient advocacy resources to learn how to navigate care, connect with support networks, and empower families

Social Security Benefits

Some families may qualify.

SSA WEBSITE

GlobalGenes Allies in Rare Diseases

Toolkits to help patients, parents, and caregivers

GLOBAL GENES WEBSITE

EasterSeals Services

Assists people with disabilities.

EASTERSEALS WEBSITE

The Special Needs Alliance

National Alliance of
Attorneys for Special Needs Planning

ALLIANCE WEBSITE

Americans with Disabilities Act

Disability rights are civil rights.

ADA WEBSITE

Patient Advocate Foundation

Eliminating obstacles in access to quality healthcare.

VIEW WEBSITE

Caregiver Resources

Our Caregiver Resources provide guidance, support, and practical tools for those caring for individuals with disabilities. Explore strategies, tips, and community connections to help make caregiving more manageable and empowering.

Caregiver Burnout

READ NOW

Kangaroo Kids Medical Pouch

GET YOURS NOW

Transitioning to Adult Care

WATCH VIDEO

A Mother's Rest for Caregivers

MOTHER'S REST WEBSITE

Mejo Medical History App

MY MEJO

Family Caregiver Alliance

FAMILY CAREGIVER ALLIANCE

Medical Resources

Our Medical Resources provide families with trusted guidance on managing all aspects of SPATA5 and SPATA5L1, from neurological symptoms to overall health and care.