Rare diseases are anything but rare to us. According to the National Institute of Health, 40% of rare disorders have a neurological component, and 90% of all rare childhood disorders have major neurological effects.
We know that when the diagnosis is hard to spell, harder to explain, and even harder to live with, it’s easy to feel isolated. But if there’s one thing we’ve learned through our community of patients, caregivers, physicians, and funders, it’s that no child ever has to walk this journey alone.
This #RareDiseaseDay, we want to remind you of all the ways we can help. Whether you’re looking for a community to lean on, tips for preparing for doctors’ visits, or just general information about managing a rare disease diagnosis, we have something to help.
Below are a handful of our most popular and helpful resources, but feel free to explore our website for more.
- Transition of Care
- Child Neurologist New Visit Toolkit
- Peer Support Program
- Respite Care Notebook
- Behavior Management
You can also find more resources by browsing the ‘Tools & Resources’ on our website, and keep in touch by signing up for our newsletter.
We can’t promise what the future holds, or even what tomorrow will bring. But we can promise that we are committed to walking this journey with you.