Become a local rare disease leader in your community!
With over 7,000 rare diseases affecting over 30 million Americans (250 Million people worldwide) we know that "rare" disease is not rare at all. As we are well aware, the family support challenge is particularly difficult because the communities for any given disease are small and scattered across the country and around the globe. Disease specific foundations do a great job of electronically connecting families to each other, driving research forward, and providing general updates to families. What they cannot efficiently do, because the task is simply too immense, is to be intimately aware of every family and the local resources available to meet their needs.
Connecting Locally, Sharing Expertise, Building Support
It is critical that rare disease families connect with, and gain access to, local resources for medical, financial, and practical care. Navigating the local medical services to find appropriate experts, engaging local (state/county/regional) social services, and then connecting with other local rare disease families for emotional support and practical advice is a challenge. Even if the disease is different, the local issues related to finding experts and accessing resources are the same. What we want to eliminate is today's model of every rare disease family starting from scratch to recreate the support wheel because they have no way to engage with and take advantage of what others have already learned about local resources.
The Global Genes 'Local Leaders' model will fill this gap by creating a "go to" place for families with rare diseases to efficiently access local support. These local advocates will not be experts on every disease, but they will know how to quickly access disease specific information (a separate Global Genes Project effort) and most importantly, they will know the logistics for discovering, connecting to, and accessing local support of all types.
The network will eventually grow to hundreds and even thousands of local volunteers across the country, encompassing all states, and most major cities. The local advocates will be able to call on each other, their local network, the foundations, and the Global Genes Project for support. They will not displace the hundreds of disease specific foundations that already exist; rather they will complement and magnify those efforts. The local advocates will also fill the gap for the thousands of rare diseases that do not currently have disease-specific foundations where families are left with no local, regional, or national support. Our long term goals will be to expand this model globally.
Local Leaders Volunteers Needed
Global Genes Project team members are currently building the tools for this grassroots program. We are currently looking for rare disease advocates to contact us if they are interested in participating in a 'Local Leaders' program in their area. Please send your inquiry to info@globalgenesproject.org And if you have an interest in helping build a Local Leaders program in your area we hope to hear from you as well!! It takes a village!
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