Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting Illness and you’ll be met by blank stares–or at least, you would have–until now.
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 the RARE Toolkits, a platform of resources designed to educate, empower and engage the rare disease community.
Developed with direct guidance and input by members of the rare disease community, the 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
- Providing tips and tools for fundraising
Translations Coming Soon
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.
The 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.