We provide a variety of support and resources for our families, from an online community of parents to connect with to accurate information that you can pass along to your doctors.
If you’re connecting with KIF1A.ORG for the first time, we invite you to complete the form on the Newly Diagnosed page. From there, we’ll be in touch with additional resources and support for you to learn more about the disorder, our community and be able to ask questions or share advice on what’s worked well for your family.
Private Support Group
Request to join our private Facebook group, full of other families caring for or affected by KIF1A Associated Neurological Disorder (KAND).
2019 KAND Conference
Our upcoming conference is a free event held in New York City that unites families, medical professionals and researchers to discuss KIF1A Associated Neurological Disorder, caring for patients and the road to a cure. Learn more about the family conference and send us your registration.
2017 Family Meeting Presentation
It’s okay if you weren’t able to make our first family meeting. You can still download the presentation! It includes an overview of genetics, the KIF1A gene and variants, and research studies looking into symptoms of the disorder.
- The Mighty — an online community where those facing health challenges can connect with others in similar situations and get support
- Rare Genomes Project — works to advance genome sequencing technology and offer that technology to every rare and undiagnosed family
- ClinVar — Aggregate information about genomic variation and its relationship to human health
- National Center for Biotechnology Information (NCBI) — Review their summary of KIF1A and explanation of gene mutations
- PubMed — Find published studies about the KIF1A gene and mutations
- Decipher — Aggregate data involving KIF1A research studies
- Discover Program — Columbia University initiative to provide complicated or difficult diagnoses to families
- Genetic and Rare Diseases Information Center — Specialists available to answer questions in both English and Spanish
- Brain Development Research Program — Developing a better way to diagnose and treat conditions affecting brain development
- OMIM — Descriptions and explanations of kinesins and the KIF1A gene
- GeneCards — Summaries and information on the KIF1A gene
- UniProt — Information on KIF1A molecular function and biological process
- National Organization on Rare Disorders — Their information on Hereditary Spastic Paraplegia may be of special interest
- Chung Lab News — See the latest on KIF1A research from our partner, Chung Lab
- Global Genes — An advocacy organization and partner who works with the rare disease community
- MyGene2 — Search for and contact other families who have the same mutations in the same gene to share information and offer support