Living with limb-girdle muscular dystrophy (LGMD) is a journey that affects not only the individual but also their loved ones. The “Patient & Family Resources” page is dedicated to offering a holistic range of resources designed to support both patients and their families. From understanding career opportunities tailored for those with rare diseases to practical guides on obtaining the right wheelchair, this resource hub aims to provide comprehensive insights and actionable advice. Whether you’re a patient seeking guidance or a family member looking for support, this page serves as a beacon of information and hope.
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
