Celebrated each year on the last day of February, Rare Disease Day honors 300 million people worldwide living with a rare condition. This global observance raises awareness and calls for better access to care, research, and treatment.
At flok, Rare Disease Day is about showing up together—because while each of our conditions is rare, we are large in number as one united flok.
Rare Can Mean Gaps in Care
flok supports individuals and families living with inherited metabolic conditions or disorders (IMDs), including Classical HCU, PKU, MSUD, Organic Acidemias, Tyrosinemia, and Urea Cycle Disorders.
Fewer than 50,000 people in the U.S. live with these conditions. This often means:
- Limited research and data
- Fewer treatment options
- Barriers to diagnosis and access to care
Our community is rare—but our needs are urgent and shared by other individuals and families around the world.
Advocacy in Action
Though each rare condition is unique, many challenges are universal. Across the rare disease community, people face delayed diagnoses, limited therapies, and uneven access to care.
Rare Disease Day brings this global community together—uniting patients, caregivers, clinicians, researchers, and advocates to push for health equity and progress.
This momentum turns into action through Rare Disease Week on Capitol Hill—a multi-day event hosted by Everylife Foundation for Rare Diseases. Members of the rare disease community gather in Washington, DC to meet with Congress, share lived experiences, and highlight policy priorities that can improve care for individuals and families nationwide.
flok’s Director of Community Engagement, Kristen Vanags, will attend to help elevate the needs of our community members living with inherited metabolic conditions. Kristen shares her excitement to join fellow rare disease advocates to connect and learn from one another:
”Being together and hearing each other’s stories is always inspiring, and has the power to effect policy change.”A key event focus this year is the Medical Foods & Formulas Access Act of 2025, a bipartisan bill introduced in both the House and Senate in December. If passed, the legislation would expand insurance coverage for medical foods and formulas—essential treatments for people with IMDs—across federal programs including Medicare, Medicaid, CHIP, and Federal Employee Health Plans.
Rare Disease Week provides an important opportunity to explain why this bill matters and how access to medical nutrition directly affects daily health and long-term outcomes for our community.
Ways You Can Get Involved This February
Spread awareness
- Share our Rare Disease Day Zebra Finch graphics on social media to show support for people living with rare IMDs
Advocate for better care
- Contact your U.S. Senators and Representative and ask them to co-sponsor the Medical Foods & Formulas Access Act of 2025
- Share your personal story to help policymakers understand the importance of the bill and its impact on our community at nutritionequity.org
Support the flok community
- Attend Rare Disease Week on Capitol Hill, February 24-26, hosted by the EveryLife Foundation for Rare Diseases
- Make a gift to flok to power daily care tools, community programs, and research progress: flok.org/donate
Celebrating Rare—Together
When you take part in Rare Disease Day, you help amplify the voices of individuals and families everywhere. Our conditions may be rare, but they deserve focused research and equitable access to care.
This February, let’s help our zebra finches soar—together. Learn more: flok.org/rdd.
