Giving in a Changing Landscape: Why 2025 Matters for Rare Disease Families

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In July 2025, Congress enacted one of the most significant federal tax reforms in recent memory, often referred to as the “One Big Beautiful Bill” (OBBBA). Buried within this sweeping legislation are provisions that directly affect charitable giving. For philanthropists, foundations, and families alike, these changes will reshape how generosity is measured and rewarded.

Here’s the most important thing to know: 2025 is a singular year of opportunity. It is the final year before new rules take effect, rules that add floors and caps to charitable deductions, limiting the benefit of giving for many high-capacity donors. This makes 2025 a moment to act boldly, with both purpose and strategy.

For the rare disease community, the timing could not be more urgent. Families are waiting for answers. Researchers are on the edge of discovery. New therapies are within reach. The decisions donors make in this window year will shape what progress looks like in the decade ahead.

Why 2025 Is a Window Year

In 2025, charitable gifts are still governed by the more favorable current rules:

  • Full deductibility (subject to existing caps)
  • No “floor” limiting deductions
  • Full leverage of the donor’s marginal tax rate

That changes in 2026. Consider a donor with an adjusted gross income (AGI) of $10 million who contributes $1 million to a qualified charity:

  • In 2025, the full $1 million is deductible under current rules.
  • In 2026, $50,000 (0.5% of AGI) will not be deductible due to the new floor, and the value of the deduction will be capped at 35%, even if the donor’s bracket is higher.

This shift could redirect hundreds of thousands of dollars away from charitable causes — unless donors plan ahead and act now.

What’s Changing in 2026

Here are the main changes to expect:

  • A 0.5% floor. Charitable deductions will only apply to giving above 0.5% of AGI.
  • A 35% deduction cap. Even donors in higher brackets will be limited to a 35% benefit for charitable deductions.
  • A new deduction for non-itemizers. Up to $1,000 (individual) or $2,000 (joint) in cash gifts to public charities. (Donor-advised funds and supporting organizations are excluded.)
  • The 60% AGI cap for cash gifts remains in place.

What Donors Can Do Now

Philanthropic advisors are already urging donors to treat 2025 as a year for intentional generosity. Strategies to consider include:

  • Accelerating or “bundling” gifts that might otherwise be spread across several years.
  • Donating appreciated assets like stock or real estate, with proper appraisals and documentation.
  • Using donor-advised funds (DAFs) to secure the deduction now while distributing gifts later.
  • Prioritizing precise documentation, since IRS scrutiny is expected to intensify.

Beyond the Numbers

Tax law can feel technical, but at its core, this is about people. Every charitable gift represents compassion, hope, and the belief that tomorrow can be brighter than today.

At NORD, we see the ripple effect of generosity every day. A family finds answers after years of searching. A patient connects with life-changing care. A researcher receives the funding to take a promising idea into the lab. None of this happens without donors who choose to act.

That’s why this window year matters so much. With more than 10,000 known rare diseases, most without a treatment, every dollar, every breakthrough, every act of generosity is urgent.

If you are considering your giving strategy, we encourage you to speak with your advisors and explore how 2025 can be the year to make your most meaningful gift. It is a chance to maximize both the impact of your generosity and its tax efficiency before the new rules take effect.

And please know: you are not navigating this alone and we are also here as a resource. If you like, NORD’s Director of Philanthropy, Jenna Scheer, would be happy to run a scenario with you (or with your advisor) to see how much additional gift you might consider in 2025 to optimize your tax benefit. Please contact Jenna directly at [email protected] if you’d like to explore that.

We are on the cusp of a rare disease revolution. The science is ready. The tools exist. Awareness is growing. Without investment, progress will stall and families will wait another decade for answers. We cannot let that happen.

Join the movement. Your gift is not charity. It is an investment in progress for millions.

Thank you again for your generosity and your partnership. Future stability and impact depend on bold and informed giving decisions.

Explore all ways to contribute to NORD here, and consider making your gift today.