NF Around the World: A Global Perspective

Neurofibromatosis affects people everywhere—but access to care, research, and support differs dramatically depending on where you live. Let’s take a look at how NF is approached around the globe.

In the United States

• Specialized NF clinics and research centers exist in major cities

• Organizations like Children’s Tumor Foundation lead awareness campaigns

• Access to new treatments like MEK inhibitors is improving, but still costly

In Europe

• Countries like the UK, Germany, and France have national rare disease networks that include NF

• Universal healthcare makes diagnosis and treatment more accessible

In Low-Resource Countries

• Limited access to specialists

• Many cases go undiagnosed or untreated

• Families often rely on community support rather than formal care

Why Global Collaboration Matters

Rare diseases like NF need international cooperation—sharing research, data, and resources can speed up breakthroughs.

How You Can Be Part of a Global Effort:

• Support international NF research collaborations

• Connect with rare disease groups in other countries

• Advocate for equal access to care everywhere

Together, we can make NF awareness truly worldwide.