Tools for School, Campus, and Beyond

September 17, 2019 in Disability and health insurance, Students with a hypersomnia

It’s September, and students of all ages – from K-12 through college and beyond – have begun another year of studies or training. But when IH is part of your life, going to school, being on campus, or learning online or in the field, can be incredibly challenging. We’re here to help! The Hypersomnia Foundation has teamed up with Global Genes, an international nonprofit advocacy group for individuals and families fighting rare diseases, to offer free resources for all students, no matter their age.

Over the past few years, the Hypersomnia Foundation has created a series of educational guides to help students with sleep disorders (as well as their families and their schools) succeed in their educational careers. Our educational guides, which are called Education Essentials for Students, are easy to access on our website and are free.

Today, we are very pleased to announce that, for the first time, we are able to provide access to additional supports, aids, and strategies through our collaboration with Global Genes and its amazing set of RARE Toolkits. The Global Genes RARE Toolkits are resources on various topics affecting people with rare diseases and their supporters, and feature insights and best practices from industry experts and experienced advocates. The Toolkits cover a broad band of topics, including resources for students of all ages, and, like our Education Essentials Guides, are free. These RARE Toolkits are listed below, where you can access them by a simple click of your mouse. Over the next year, we plan to further integrate these Global Genes RARE Toolkits into our Education Essentials Guides and throughout our website, so that everyone accessing our HF resources can also benefit from the valuable information contained in these RARE Toolkits.

FOR K-12 STUDENTS

Hypersomnia Foundation Education Essential for Students – K-12 Education Program

Global Genes RARE Toolkits

• The ABCs of Advocating in the Classroom
• Navigating Emotions: A Guide for Teenagers with Rare Diseases
• Advocating for Your Child with a Rare Disease at Their School

FOR COLLEGE, ONLINE, AND POST- AND HIGH SCHOOL JUNIOR/SENIOR STUDENTS

Hypersomnia Foundation Education Essential for Students – Higher Education Program

Global Genes RARE Toolkits (ages teen-26)

• Taking Control: Optimizing Your Potential as a Young Adult with a Rare Disease
• Taking Control: Gaining Independence as a Young Adult with a Rare Disease

BEYOND CLASSROOMS, THE CAMPUS, AND TRAINING PROGRAMS

Global Genes RARE Toolkits

• Building a Care Notebook
• Navigating Health Insurance
• Access to Unapproved Medicine: Is This an Option for Me? (USA)
• Access to Unapproved Medicine: Is This an Option for Me? (Canada)
• How to Promote Your Rare Disease Story Through Social Media

Global Genes is a leading rare disease patient advocacy organization of advocates, partners and collaborators who affect change by empowering patients, building communities, and driving forward momentum for rare disease globally. Its mission is to eliminate the challenges of rare disease by providing patients with educational tools, building awareness, providing critical connections to people and resources, and investing in technologies that will positively impact affected patients and families. Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 known rare diseases that impact approximately 30 million Americans and 400 million people worldwide.

The Global Genes RARE Toolkits are resources on various topics affecting rare disease patients, families and caregivers. Featuring insights and best practices from industry experts and experienced advocates, the RARE Toolkits cover topics including navigating health insurance, the drug development process, advocating for your child, and starting a nonprofit. “We hope you find these resources helpful in your rare disease journey!” Appreciation is extended to the staff in the Global Genes Patient Engagement Department who made possible this collaboration of resources for the hypersomnia community: Laura Sprockett, Meredeth Cagel, Jane Nicholson, and Ashley Yee.