Programs

Providing supportive programming to the NF community is at the core of what we do.

Our programs allow those affected to speak freely about their journey, get the support they need from others with similar lived experiences, and access resources that help improve their overall wellbeing.

Are you looking for a compassionate community for you and your family?

Access transformative programming that empowers NF families and young adults.

NF Family Wellness Retreat

Are you or your little one living with Neurofibromatosis?

The NF Family Wellness Retreat is an opportunity to connect with other families affected by Neurofibromatosis. The 4-day retreat is free to families, including food and lodging, and has been positively impacting our community since 2010.

Retreat priorities are to strengthen the family unit, promote healthy lifestyles, and address NF manifestations.

NF Young Adult Leadership Program

Are you a young adult living with NF and want to make a difference in your community?

The NF Young Adult Leadership Program is an opportunity for NF-affected young adults to learn effective advocacy skills and speak directly to policymakers about NF. The 5-day program is the first of its kind, allowing young adults to make a difference in the NF community.

Program priorities are to create leaders, advance research, and bring new voices to the forefront of advocacy.

NF Collective

On December 4, 2015, spearheaded by the Littlest Tumor Foundation, various leaders in the neurofibromatosis (NF) community met in Washington, DC to discuss and establish a collective impact initiative. Our ongoing work to scale up is much more effective as a collective effort than any of us could achieve as individual organizations.

What we have established is a single, nationwide website that NF patients and their families can visit to find a doctor, specialist, and medical facility that will meet their needs.

We believe this NF Provider Website will be vital to NF patients and their families as well as medical professionals working in the field. Connecting NF patients with appropriate medical care moves the NF cause forward, bringing effective treatments, prevention, and even a cure within reach.

Ready to make a real impact in the lives of youth and families in your community?

Creating powerful changes comes from a passion for the cause and a belief that we, as a community, can make a difference.

“[NFYA Leadership Program] was beyond positive! I got to meet three people who are going to be lifelong friends who all suffer from NF. And I got to see more of how our government works and how we get the funding.”

NFYA Leadership Program participant

“I’m so grateful that you guys exist. I wish I had the words – it’s life changing because you get to have a moment to be free and know everything is going to be okay. It’s needed.”

Retreat participant (NF Mom)

“I’m more proactive and thinking of a way to take charge and be a leader and speak out.”

NFYA Leadership Program participant

“Before I went to the [NFYA Leadership] program, I was extremely nervous to speak in general and I’m not usually one that takes a leadership role so getting that experience made me more confident in who I am.”

NFYA Leadership Program participant

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