Care-for-Rare— From Discovery to Cure

Children with rare diseases are the “orphans” of medicine. Their lives — and their family’s lives — are consumed by doctor appointments, visiting specialist after specialist (and often hospital after hospital) in the hunt for an end to their suffering. Frequent misdiagnoses add emotional agony. The uncertainty persists even when a definitive diagnosis is made, since many rare diseases are still incurable.

It does not need to be this way.

Through our focus on innovative research and international cooperation, Care-for-Rare gives children with rare diseases hope for a cure.

You can help save a child’s life. Donate now to help Care For Rare:

Do research to understand the underlying principles of disease-causing mechanisms, increase diagnostic success rates and develop curative therapies.
Perform complex laboratory testing (next-generation sequencing, whole-genome sequencing) to identify and validate specific disease-causing mechanisms.
Provide individual case support: diagnosis and access to state-of-the-art diagnostic and therapeutic strategies
Continue to educate of physicians and scientists in the field of rare diseases
Do public outreach to educate lay and professional audiences about the unique challenges and needs of children with rare diseases and engage the community as advocates for these children.

Alliance

The Care-for-Rare Alliance comprises a large network of physicians and scientists working at academic pediatric centers and science institutes to support the foundation’s mission: Treating children with rare diseases, discovering the causes of diseases, and developing new therapies.

Academy

The Care-for-Rare Academy supports fellows from all over the world who are committed to learning about the diagnosis of and therapies for children suffering from rare diseases.

Aid

The Care-for-Rare Aid initiative grants allow individual patients to have access to modern genomic medicine — throughout the world — regardless of the family’s ability to pay. There is an urgent need to provide help for patients in less privileged circumstances.