Patient Organization Partnership Opportunities

CNF is passionate about collaboration and moving the entire community forward to achieve our goals. To that end, below is a compiled list of opportunities for organizations to partner with CNF. As a potential partner of CNF, we encourage you to read through our organizational background listed below. We believe that everything we do should be rooted in our values and want to ensure that our partner organizations adhere to a similar set of values.

CNF’s Vision
A world in which all children affected by neurologic disorders reach their full potential.

CNF’s Mission
To serve as a collaborative center of education and support for caregivers and their children with neurologic conditions.

CNF Values
Professionalism, Integrity, Collaboration, Stewardship learn more on our about us page.

THRIVE Initiative
THRIVE is a collaborative initiative to engage, embrace and drive change in the rare disease community. By acknowledging the need to communicate and lean on the strengths of our allies, brighter futures will come. Learn more on the THRIVE website.

As a note to our advocacy organization partners, CNF is not a typical foundation. While we do have some funding allocated for research, our focus is on sustaining collaborative programs that promote various areas of wellbeing for patients and families dealing with neurologic conditions. Generally, our partnerships with advocacy organizations are not financial in nature but we have a variety of opportunities for organizations to partner with CNF to build up a shared mission of serving the pediatric neurology community.

If you are specifically looking for a financial partnership with CNF please visit this webpage to see if your goal matches with any of CNF’s grants or scholarships.

CNF Programs and Tools

All of CNF’s programs are free and available on our website for the public to use. Please feel free to access, print, share, and distribute any of the materials discussed below.

Programs

Tool/Description

Transitions of Care

Provide your community with the tools to transition into the adult healthcare system. Click here to access the full toolkit created by CNF that outlines the steps for transitions.

Family Support and Empowerment Program (FSEP)

Connect families who have a child living with a rare neurologic condition to a Peer Support Specialist that can provide emotional support and resources. Click here to review more information and contact a specialist via email.

Clinical Trial Resources

Finding clinical trials can be difficult, CNF has a clinical trial directory to help match patients with researchers. To learn more visit our website here.

SUDEP Resources

Many parents are unaware of the danger of Sudden Unexpected Death in Epilepsy (SUDEP) for patients with epilepsy. Find resources to help facilitate the discussion between physician and parents here.

Respite Care Notebook

Access a full respite care* notebook here for parents to record all the necessary details related to their child when using respite care.
*Respite care is temporary care that would be provided to a child with a neurologic condition by someone who is not their primary caregiver.

Surgery for Difficult-to-Treat Epilepsy: A Step-By-Step Guide for Patients and Families

Access the full booklet here to learn more about surgery as an option for treating epilepsy.

Please review the options listed below and let us know which of these are of most interest to you.

Partnership Opportunities

Partnerships

How to Engage

Story Telling

CNF believes that a powerful way to raise awareness and connect communities together is through story telling. If you have a story to tell about your community’s experiences with a neurological condition, we would love to hear it and discuss how we can weave our stories together to build up the community and raise awareness.

  • Ideas for sharing stories could include social media posts, blog posts, and videos. We would love to hear from you via our request form what your story is and how you would be comfortable sharing it. Send us an email to let us know what you are interested in sharing.

Information Sharing and Awareness Building

Share your efforts, announcements, or updates via CNF promotional platforms to over 62,000 members of our outreach network for FREE (social media, e-newsletter, website).

  • In order to ensure we make the most of our partnerships, we ask that you submit a request for social promotion. Please email us with your specific request for content promotion and our communications staff will be in contact with you once a request is received.

Event Promotion

CNF has a calendar on our website updated with all child neurology relevant events happening. If you would like to include an event in the calendar please visit the website here.

Endorsement

Consider engaging with CNF’s Board of Directors and content expertise in development, promotion, or distribution of your patient educational materials. Click here to request an application for endorsement of patient and/or caregiver educational material.

Join our partners newsletter

Join our Partners List to receive the latest information and opportunities from CNF via our newsletter. All information can be shared with your networks.

Event Attendance

If you would like CNF showcased or in attendance at a conference, gala, or other event please reach out with your event information and expectations.