#RAREAWARE

RARE
DISEASE

We believe that rare disease patients should be heard and supported. This campaign highlights #RareAware resources that are working to accelerate the development of solutions for these patients. Join us and get involved today!

95%

95% of rare diseases lack an approved therapy

1 in 10

Americans are living
with a rare disease

~7,000

~7,000 distinct rare diseases exist

Rare Disease Centers of Excellence

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Patient Education/Resources

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Are You a Researcher Interested in Rare Disease?

The NIH Grant Finder Can Help! ​

The NIH grant finder connects researchers interested in studying rare disease with advocacy organizations that align with their research interests. This service provides doctors and scientists the opportunity to receive additional funding for their research that they might not have been able to initially secure. If you work in the medical research field and feel passionately about researching rare disease and require additional resources, the NIH grant finder is a great place to start.

Why Study Rare Disease?​ ​

1 in 10 Americans suffer from a rare disease. While some progress in the treatment of these diseases has been made, many rare diseases remain somewhat of a mystery to most medical professionals. In many cases, healthcare providers don’t have enough information about the cause or course of the disease to provide their patients with effective treatments.

The rare disease research space deserves more attention, and more researchers are dedicating themselves to finding effective treatments for these patients. If you have an interest in rare disease research, please consider lending a hand to those who suffer from a disease with an unknown cause and no known treatments. Help provide them the attention they deserve.

Examples of Funded Grants​

One example a recent paper that received funding from one of the advocacy organizations listed on the NIH site comes from the Progeria Research Foundation, which just issued a grant for the study, “Monitoring genome structure and function’s recovery upon pharmacological treatments in Hutchinson Gilford Progeria Syndrome”
Another example is from the Muscular Dystrophy Association (MDA) which funded this study, “Generation of large dystrophins in muscle via AAV vector delivery” which seeks to look into new treatment methods for patients with Duchenne muscular dystrophy.

How to Apply?

Because all the links on the NIH grant finder site link to different organizations, each with their own application process, there is no one-size-fits-all approach to applying for these grants. Instead, visit the website of the advocacy organization that most interests you, and learn how to apply there. ​

Immune Deficiency Foundation

The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research.

Contact

110 West Road​
Suite 300​
Towson, MD 21204​
Phone: 800-296-4433​
Fax: 410-321-9165​
Ask IDF Form​
Office Hours: Monday – Friday 9:00 a.m. – 5:00 p.m. (ET)

Questions about primary immunodeficiency or IDF programs?

Submit our Ask IDF form.​
Interested in volunteering?​
Contact the PI Community Services Department at ​
800-296-4433, or click here to e-mail us.

Axiom’s Involvement
in Rare Disease

Axiom Town Hall
on Rare Disease

Axiom Infographics