More Than You Can Imagine: Rare Disease Day 2026 and the Community That Rarely Gets Enough

On February 28, 2026, the world observes Rare Disease Day — a global advocacy initiative launched in 2008 by the European Organisation for Rare Diseases (EURORDIS) and brought to the United States by the National Organization for Rare Disorders (NORD), the official U.S. partner. Now in its 19th year, the 2026 campaign spans more than 600 events across 106 countries. The theme: "More Than You Can Imagine."

That theme names something important. The impact of a rare disease — on the individual, the family, the caregiver, the entire household — is consistently underestimated by everyone who has not lived it. The financial pressure. The diagnostic odyssey that can stretch for years. The isolation of having a condition that most people, and many healthcare providers, have never encountered. The exhaustion of navigating a benefits and healthcare system never designed with rare diseases in mind.

At Shared Horizons, we serve individuals and families living with rare diseases every day. Many of our beneficiaries carry diagnoses that most people have never heard of. Their needs are real, their planning challenges are complex, and their futures deserve the same protection and dignity as anyone else's.

What Is a Rare Disease?

In the United States, a disease or condition is considered rare if it affects fewer than 200,000 Americans at any given time — the threshold established by the Orphan Drug Act of 1983, which created the first federal framework for incentivizing rare disease research and treatment. Globally, more than 7,000 rare diseases have been identified, and new conditions are being described each year.

Despite the word "rare," the collective impact is enormous:

• More than 30 million Americans — nearly 1 in 10 — are living with a rare disease

• Worldwide, an estimated 300 million people are affectedApproximately 80% of rare diseases have a genetic component

• The average person with a rare disease waits 4 to 7 years for an accurate diagnosis — often seeing multiple specialists and receiving incorrect diagnoses along the way

• Fewer than 5% of rare diseases currently have an FDA-approved treatment

This year, NORD's Earn Your Stripes: Rare Disease CME Challenge is calling on clinicians across specialties — including primary care and pediatrics — to complete continuing medical education on rare disease recognition and management. Closing the diagnostic gap starts with education.

Rare Diseases and the Disability System: What Every Professional Needs to Know

Many rare diseases result in significant, lifelong disability. The intersection of a rare diagnosis with the disability benefits and legal planning systems creates challenges that are disproportionately difficult for families who are already navigating uncharted medical territory.

For Social Security: Rare diseases may qualify for SSI and/or SSDI, but the path is not always straightforward. SSA's Listing of Impairments does not include most rare diseases by name. Instead, eligibility is typically established by demonstrating that the functional limitations of the condition equal those of a listed impairment, or through the RFC (Residual Functional Capacity) process. Families and advocates should document functional limitations in detail — not just the diagnosis — and should request an expedited review under SSA's Compassionate Allowances program if the condition is on the Compassionate Allowances list, which includes over 250 rare diseases and cancers.

For Medicaid and state disability agencies: Medicaid is often the primary payer for rare disease care, including specialty medications, home nursing, therapy, durable medical equipment, and home and community-based services. However, Medicaid coverage for rare disease treatments — particularly high-cost orphan drugs — varies dramatically by state and is frequently contested. Families living with rare diseases need benefits counselors and advocates who understand both Medicaid policy and the specific medical needs of their condition.

For trial lawyers and settlement planners: Rare diseases sometimes arise from or are exacerbated by environmental exposures, medical errors, or product liability. When settling a case for a client with a rare disease, the lifetime cost of care is difficult to project because the evidence base is thin and treatment costs can be extraordinarily high. A Pooled Special Needs Trust must be funded with careful attention to the specific trajectory of the disease and the cost of emerging treatments. Shared Horizons can work alongside your life care planner and medical experts to ensure trust funding is aligned with actual projected need.

For families and guardians: If your loved one has a rare disease and relies on SSI or Medicaid, any asset — inheritance, personal injury settlement, or gift — received directly can disqualify them from those benefits immediately. Funds must be directed to a Pooled Special Needs Trust before or at the time of receipt. This is not a technicality. It is the difference between benefit protection and a crisis that can take months or years to resolve.

For educators and IEP teams: Children with rare diseases often have complex medical needs that intersect with their educational experience — frequent hospitalizations, fatigue, pain, cognitive effects of medication, and sensory or physical limitations. IDEA's Child Find obligation requires schools to identify and evaluate children who may need special education services, regardless of the rarity of their diagnosis. An IEP can include health plan accommodations, homebound instruction, and related services tailored to a child's specific rare disease presentation.

For local government agencies and public benefit agencies: People living with rare diseases face compounding disadvantages in accessing public services — because few systems are designed for conditions that affect small numbers of people. Flexible, person-centered service delivery is not a luxury for the rare disease community. It is a necessity. Pooled trusts, supported by professional administration at organizations like Shared Horizons, are one mechanism for delivering that flexibility within a legally compliant framework.

The Orphan Drug Act and What It Means for Families

The Orphan Drug Act of 1983 was a landmark piece of legislation that created tax incentives, expedited FDA review, and seven-year market exclusivity for companies that develop treatments for rare diseases. It has resulted in the approval of more than 1,000 orphan drugs since its passage — a remarkable achievement.

But it has also produced some of the most expensive medications in the world. Gene therapies and targeted biologics for rare diseases can cost hundreds of thousands or even millions of dollars per treatment course. For families relying on Medicaid or private insurance, access to these treatments is not guaranteed and often requires sustained advocacy.

This is where a Pooled Special Needs Trust can play a role that no other planning tool can: holding assets that allow a person to maintain Medicaid eligibility — which is often the only realistic payer for high-cost rare disease treatments — while also funding supplemental needs that improve quality of life. The trust does not replace Medicaid. It protects it, while adding to it.

Show Your Stripes: How to Honor Rare Disease Day

The zebra is the symbol of the rare disease community — drawn from the medical teaching: "When you hear hoofbeats, think horses, not zebras." For decades, rare disease patients were the zebras no one expected to find. Rare Disease Day flips that script, celebrating the zebras and demanding that the world build systems worthy of their complexity.

This February 28th, Shared Horizons stands with the rare disease community. We invite you to:

• Wear stripes on February 28th and share #ShowYourStripes and #RareDiseaseDay on social media

• Visit rarediseaseday.us to find local events or register your own

• Connect with NORD at rarediseases.org for disease-specific resources, patient registries, and advocacy tools

• Contact Shared Horizons if you or someone in your care has a rare disease and needs trust planning: (202) 448-1460 or info@shared-horizons.org

The rare disease community is more than you can imagine. And they deserve more than they have been given. Together, we can change that.

Citations & Resources

1. NORD — Rare Disease Day 2026, Official U.S. Partner: rarediseases.org/rare-disease-day

2. EURORDIS — What Is Rare Disease Day: rarediseaseday.org

3. NORD — Earn Your Stripes CME Challenge, February 23, 2026: prnewswire.com

4. Sokolove Law — Rare Disease Day 2026 Overview: sokolovelaw.com

5. SSA — Compassionate Allowances Program: ssa.gov/compassionateallowances

6. Orphan Drug Act of 1983 — 21 U.S.C. Section 360aa et seq.

7. FDA — Orphan Drug Designations and Approvals: fda.gov/orphan

8. 42 U.S.C. Section 1396p(d)(4)(C) — Pooled Special Needs Trust authority