May is NF Awareness Month, a meaningful time for those in the Neurofibromatosis (NF) community to educate people about the condition and support those impacted by NF as they engage in informed conversations with their healthcare providers and make a plan for their care.
In honor of NF Awareness month, working alongside the patient and caregiver community, we’ve developed a new resource to educate and support those living with NF and their loved ones. UnderstandNF.com shines a light on NF by providing a central location where information about living with and managing NF from healthcare providers, caregivers and families can be found. It includes videos on what NF is as well as graphics that can be downloaded and/or shared on social media encouraging patients and families to make a plan for care with their healthcare provider.
Though NF is one of the most common inherited neurological disorders, many people have never heard of it and are surprised when their child is diagnosed. Caregivers can feel overwhelmed as they navigate care decisions for their child while managing this multisystem disorder.
UnderstandNF.com will be updated with new content throughout the year.
The resources currently available include:
- Make A Plan. NF can impact many aspects of life. That’s why it’s important for people living with NF and their families to stay in contact with their doctors to make a plan that gets the right care for them, especially during COVID-19.
- NF Conversations. NF raises questions, obstacles and uncertainties that can be difficult to navigate for patients and their loved ones. NF Conversations is a place for those in the NF community – whether they are living with NF, caring for a loved one, or working in healthcare – to come together to discuss those topics with one another as they navigate this rare disease.
- Talking about NF. Dr. Julia Meade, a pediatric oncologist and Renie Moss, a caregiver and NF advocate, discuss and share important information about NF detection for parents.
- NF Caregiver Survey Insights. We surveyed 100 NF caregivers in the US to learn more about the changing needs and challenges NF families face as they navigate day-to-day life, during the pandemic and beyond.
Stay tuned for the full insights to be shared in the coming weeks
By creating this resource and sharing with the broader community, our hope is that NF is no longer an unfamiliar condition to so many.