Interested in Forming a Foundation?
It is estimated that more than 50% of rare diseases don’t have any organized representation or support, which leaves patients searching for resources and connections. NORD’s RareLaunch® Forming a Foundation program provides education, training and support for patients to start nonprofits; for those involved in nonprofits, the program also builds capacity and implements good governance practices to ensure their development is sustainable. Topics addressed as part of this program include:
- Establishing a 501c(3) tax-exempt organization
- Leadership/Executive Director mentoring and training
- Resources for recruiting a Board of Directors and Scientific and/or Medical Advisory Committee(s)
- Promotion of the newly established organization to continue to find and connect patients, caregivers and other members of the community through a targeted communications approach
- Development of social media platforms and strategies for continued engagement, such as LinkedIn, Facebook and Twitter
Is Your Nonprofit Expanding Work in Research?
If you are working with a patient advocacy organization and considering becoming more involved in research NORD’s RareLaunch Research Ready program is designed to provide training and guidance to help you get started and consider your options. Because rare diseases often do not have any research or drug development activity underway, it is critical that patient communities are empowered and educated about becoming research ready so that they can effectively support research and development when it begins. Training includes:
- Information on the rare disease drug development, the clinical trial process, and the role longitudinal natural history data plays in understanding disease progression and supporting research
- Technical support to provide a platform for disease specific registries and natural history studies
- Collaboration with available researchers and epidemiologists to develop questions for inclusion in the patient registry to help in identifying the natural progression of the disease
- Education on dealing with research grants, including how to manage the RFP granting and evaluation process
Providing capacity building workshops, toolkits and mentoring support to ensure new rare disease patient organizations continue to form and are ready to support research and drug development will strengthen the rare disease patient community and support collaboration across stakeholder groups to get safe and effective treatments to patients more quickly.
If you would like to receive periodic updates about our RareLaunch program, email [email protected] to be added to our email list.