Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others
With 1 in 10 Americans living with rare diseases, the need for access to powerful, actionable information has never been greater. Global Genes™ is proud to launch RARE Toolkits, a platform of resources designed to educate, empower and engage the rare disease community. These free resources, available at globalgenes.org/toolkits, are accessible, interactive, easily readable, and are the initial series in what is expected to be a much larger volume of resources within the next year. Printed quantities may also be ordered in bulk by contacting the Global Genes office.
The RARE Toolkits were developed with direct guidance and input by members of the rare disease community. Initial toolkit topics include: becoming a rare disease advocate, starting your own rare disease charity, bringing your cause to Capitol Hill, parenting a child with a life-limiting illness and providing tips and tools for fundraising. To extend the reach, the RARE Toolkits will be accessible globally through translated adaptations. Global Genes is launching this resource with social media promotion (including the unique hashtag #RareToolkits), outreach to media and bloggers, updates to medical groups, genetic counselors and support of other advocacy groups.
“We are thrilled to launch the RARE Toolkits to fill a huge unmet need in the community,” said Andrea Epstein, Executive Director, Global Genes. “When we talk to patients, parents and caregivers, we see firsthand how pervasive the lack of information is. People feel very much alone. But with resources like these toolkits, which are just the first of many in our educational platform, we know that people can take control and advocate for themselves, for their loved ones, and for their own rare disease community. And with more than 350 million people worldwide living with rare diseases, we are excited to begin offering these resources in other languages, starting with Spanish later this year.”
About Global Genes™ – Allies in Rare Disease
Global Genes™ is a leading rare and genetic disease patient advocacy organization. The group’s mission is to ‘eliminate the challenges of rare disease,’ by providing patients with educational tools, by building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact patients within their lifetime. The goal is to help equip patient advocates to become successful empowered activists for their disease. Global Genes does this through a growing portfolio of educational tools and resources, events, building out critical connections and funding innovations in science and technology that will impact patients within their lifetime. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes™ unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.