Rare Disease Resources for Individuals, Caregivers, and Advocates

Explore Global Genes Curated Support Resources for Individuals, Caregivers, and Advocates

At Global Genes, we offer support and resources for individuals with rare disease, as well as advocates and caregivers. Explore our curated collection of resources and more below.

 

Resources for the Rare Individual, Rare Caregiver, Family Members, and Friends  

Sharing Your Rare Disease Story

When you share your rare disease story the life you change may not only be your own. Doing this should have benefits to you personally. You’ll feel seen and less alone, less misunderstood. But you may also open the door for others to lend you support.

Learn how to share your story!

 

Tips For Living With a Rare Disease Heading Into a New Year

Those living with a rare disease may have resolutions that look different from everyone else’s. We’ve gathered some advice that may help manage your resolutions and expectations.

 

Financial Literacy and Navigation In Rare Disease 

If you are living with a rare disease or a caregiver, you already know the hardships of navigating healthcare and finding the finances. This journey can quickly strain household and individual finances and contribute to financial hardship. This toolkit provides information and resources to help you navigate access to healthcare, build financial confidence, and identify ways to pay for healthcare.  Additionally, our Financial Assistance Webinar series videos are available to view here.

 

Helping People with Undiagnosed Rare Diseases Find Answers 

Michele Herndon’s son Mitchell began developing symptoms of an ultra-rare neurological condition in 2012. Herndon not only started the Mitchell & Friends Foundation but is the program director of the Undiagnosed Diseases Network Foundation. Herndon and F. Sessions Cole, secretary of the Undiagnosed Disease Network Foundation and professor of Pediatrics at Washington University School of Medicine, sat down with us to discuss the diagnostic odyssey, the work of the Undiagnosed Disease Network and the Undiagnosed Disease Network Foundation, and how the new Patient Navigator program works.

 

Five Resources For Grieving

There are many types of grief and no two people have the same grief journey. Our RARE Concierge Patient Services team has curated resources that may provide you with information and solace for your unique path.

Use of Genome Sequencing as First Line Test for Patients Suspected of Genetic Disease

The Medical Genome Initiative, a group made up of sequencing giant Illumina and leading clinical genomics laboratories, has called for the use of genome sequencing as a first line test for patients suspected of having a genetic disease.

 

Mental Health and Self-Care Resources for Rare Patients and Caregivers

Patients and caregivers living with rare diseases experience higher levels of stress, anxiety and depression. We created this list of mental health and self-care resources to help rare community members get the support they need to cope with these complex, chronic and often life-threatening conditions.

 

Resources for the Rare Advocate and Organization Leader 

Rare Research Roadmap: The Road From Bench To Bedside

The road to rare disease treatment and research is not often a straight path. This roadmap is designed to put you in the driver’s seat and in control of how to move your research forward. Whether you are an individual, advocate, or organization, this roadmap was created to help you better understand some of the potential routes to treatment and some of the key concepts that are part of these processes.

Global Genes and Simons Searchlight Event Planning Toolkit

Global Genes has partnered with Simons Searchlight to bring you our Event Planning Toolkit! This toolkit is your ultimate companion, crafted especially for you, the dedicated leader of patient advocacy groups. Its purpose is to empower you to plan and host impactful patient and research conferences. Within these pages, you will discover a treasure trove of practical resources, templates, timelines, and invaluable insights gleaned from the experiences of fellow rare disease patient advocates.

 

Financial Support for Your Community Members

As part of the Community & Capacity Building track from the 2023 RARE Advocacy Summit, this session offers ways for advocacy organizations can support their community members through financial resources. Rare disease has a big impact on your financial well-being. This session will highlight resources available to help patients and caregivers with healthcare costs, disability, and tax-advantaged savings accounts for individuals with disabilities known as ABLE accounts.

 

New Book: Positively Rare  
This collection of rare disease stories includes twenty one chapters, each written by a person living with a rare disease or caring for someone who is. Edited and published by Erin Paterson, who is both positive for Huntington’s and a caregiver to her dad who has HD, proceeds from Positively Rare will benefit Global Genes.