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.
Effectively Communicate Your Rare Disease Journey to Healthcare Providers
As a rare patient or caregiver, you probably have both the lived experience and research under your belt to make you an expert in your rare disease. Explaining your story to different doctors over and over can be exhausting and disheartening. Olivia Monforte, rare disease advocate, shares some tips to help you tell your journey.
Getting a new diagnosis brings a flood of questions, uncertainty, and unknowns. We asked our community who have been there and done that to offer tips to help guide you through the journey ahead.
Session feature from the Empowering the RARE Individual track during the 2023 RARE Advocacy Summit. When the life you’ve anticipated is forever changed by rare disease, there is often an overwhelming sense of loss. This session will discuss managing many forms of grief, learning to live well in your new reality and how to find organizations and resources that can help you cope.
Being a Caregiver for a child with a rare disease or other serious medical condition can be both enormously gratifying and extremely challenging. The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.
Coping Skills to Help Kids Living with a Chronic Illness
In this one hour virtual learning session, learn about the factors affecting mental / emotional health, the social and physical changes that kids experience that leads to differences from their peers, increases stress, anxiety and possible depression. Learn about a variety of coping techniques and outlets for expression, you can teach your child – and even do with them.
The Changing Role of Caregiver Advocates When Caregiving Ends
“Bereaved parents of rare disease children must confront not only grief but changes to large parts of our identity. The role of caregiver was likely a primary if not all encompassing identity for most of us.” Daniel DeFabio, “caregiver for life” and Director of Community Engagement for Global Genes, asked fellow “caregivers for life” for their experiences of being advocates after losing loved ones.
The RARE Siblings Experience puts the focus on the siblings of individuals with rare disease at the 2022 Patient Advocacy Summit. Sometimes called glass children, the siblings of a person with a RARE disease have unique demands put on them.
If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed as you continue to search for answers, you are bound to be wondering what can I do? We often hear “there is no guidebook for this”. It’s so hard to know where to begin to find more answers. Here are a few attempts to guide you suggested by some people who have been there.
Driving Understanding, Discovery, and Treatments for Rare Disease
We are living in the most hopeful, rapidly evolving time in medical history. Patients, caregivers and partners, clinicians, and researchers are collaborating to accelerate results in large part because of the incredible wealth of and access to health data that are allowing them to do more, faster. That’s why we have put together workshops, workbooks, and slides to guide you through your data DIY.
We know, all too well, that there is a huge need for more research, support, education and awareness in the rare community. Having the support of a large group of dedicated individuals is a good start; but to really bring about change, rare patient organizations need financial resources. The articles, tools and rare patient experiences included in this toolkit can help you maximize your fundraising potential!
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