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Understanding Career Opportunities and Employment Benefits

This high-level toolkit will help you make the most of the many opportunities for part-time, full-time, and remote work available to people living with a rare disease. This guide also includes tips and advice from rare disease patients and experts to help you make smart decisions and avoid common and costly mistakes. 

A Step-by-Step Guide for Obtaining a Wheelchair

Getting a proper wheelchair is so important for enhancing your function, maintaining comfort and improving your independence. It is a big decision…so you want to be well informed throughout the entire process.

  • Mobility Map” – an online step by step guide on how to get “The Right Wheelchair” for your specific needs!

Caring for Yourself and Your Children

This toolkit is designed as a guide for parents who live with a rare disease. In addition to recognizing the emotional impact of being both a caregiver and a patient, this toolkit provides guidance to parents on the practical elements of living with a rare disease, such as employment, insurance, applying for social benefits, and everyday health management.

Our Advocacy Partners