Cause area
Leave a legacy for Genetic & Rare Diseases
More than 10,000 rare diseases affect over 30 million Americans, and fewer than 5% have an FDA-approved treatment. Patient-driven philanthropy has a remarkable track record here.
Why it matters
About one in ten Americans lives with a rare disease, roughly half of them children. Most rare diseases are genetic, and fewer than 5% have an approved treatment, because drug companies often overlook conditions that affect few patients.
Philanthropy can change that. The Cystic Fibrosis Foundation invested about $150 million in the research behind breakthrough CF drugs, then sold its royalty rights in 2014 for $3.3 billion to fund more of its mission.
Sources:
Where an extra dollar goes furthest
These are the kinds of programs our research looks at first in this cause. With a research-guided gift, specific organizations are chosen when your gift arrives, so it can go to what works best then.
Faster diagnosis
Newborn screening and genetic testing that end years-long diagnostic odysseys.
Research groundwork
Patient registries and natural-history studies, the data drug developers need before they will invest.
New therapies
Gene therapy, and repurposing existing drugs for rare conditions.
Family support
Care navigation and financial help for families managing a rare condition.
Three ways to give to rare disease research
Recommended
Research-guided gift
Your will dedicates the gift to rare disease research and asks your executor to choose the most effective organizations working on it when the time comes, guided by published research.
A charity you name
Leave your gift to a specific organization you already know and trust.
Your own named fund
Start a fund in your name or a loved one's that gives to rare disease research every year. How it works
Sample wording for your will
Our builder fills this in for you. If you already have a will, share this wording with your attorney.
I give ____ percent (____%) of my residuary estate to one or more charitable organizations described in Sections 170(c) and 2055(a) of the Internal Revenue Code, selected by my Executor, to be used for research into, and the diagnosis and treatment of, genetic and rare diseases, and support for affected patients and families. I ask that my Executor consider the research and recommendations published by MyLastWill.org at the time of my death.
Sample language for discussion with your attorney. Not legal advice.
Questions about giving to rare disease research
My family lives with a specific condition. Can I direct my gift to it?
Yes. Name the patient foundation for that condition, or start a named legacy fund dedicated to it.
Why fund groundwork like registries instead of cures?
Because cures often can't start without it. Registries and natural-history studies show drug developers how a disease progresses, which is often the step that unlocks private investment.
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