About Care-for-Rare America
Care-for-Rare is a nonprofit organization that helps children with rare diseases in three distinct yet interconnected ways:
Connecting doctors and scientists worldwide to work collaboratively
Providing education and specialized training for pediatricians
Helping patients get the treatment they need
To establish a global alliance in order to identify the genetic causes of rare diseases and develop effective treatments, following a three-stage approach: recognize, understand, cure.
Children with rare diseases are the “orphans of medicine.” They suffer from unidentified diseases with debilitating — and often life-threatening — symptoms. Despite great advances in the field of medicine, most rare diseases have very few effective treatments and no cure.
The Care-for-Rare Foundation was established in 2009 to help children with rare diseases, the first foundation in Germany solely devoted to this cause. Brought into being by professionals from medicine and science, it pursues its mission “From Discovery to Cure” through targeted sponsorship of clinical care, research, and education. Care-for-Rare America was created in 2019 to expand our mission and further our reach.
To cure all children with rare diseases — worldwide.
No child should be destined to die of a rare disease regardless of his or her national and ethnic background or their family’s financial situation. Care-for-Rare emphasizes the dignity of each individual child and brings people together across all borders.
We believe that children suffering from rare diseases are worthy of cutting-edge science, diagnostics, and the utmost attention regardless of the rarity of their illness. They deserve the quality of care that will lead to scientific breakthroughs and cures, not only so they may lead full, healthy lives, but for the advancement of medicine for all.
Care-for-Rare has achieved many milestones, but we still have a long and challenging journey ahead of us. Your support is critically important to our success.
Care-for-Rare builds bridges between doctors, researchers, patients, political representatives, business, the media, and the arts. Every child should have access to medical care, regardless of their ethnic, religious, or financial background. Care-for-Rare America and the Care-for-Rare Foundation comply with both national and international guidelines for the work of charitable organizations.
Sulin, a seven-year-old girl suffering from liver failure, was the inspiration for Care-for-Rare and continues to influence our work to this day. The children we treat have typically been on a long journey to a definitive diagnosis, enduring countless doctor appointments, painful tests, and failed treatments. Their families have suffered alongside them, often at great personal, professional, and financial expense. We aim to end this agonizing journey, providing care and support that leads to a healthy, pain-free, and productive future.
The Foundation currently has five specific areas of funding:
1. The international Care-for-Rare Alliance unites physicians and scientists from many institutions and countries in our joint mission to investigate the causes of rare diseases and develop new treatments for them.
2. The Care-for-Rare Academy supports further education through short- and long-term training courses.
3. In individual cases Care-for-Rare Aid helps young patients facing acute emergencies with financial assistance.
4. Care-for-Rare Awareness supports campaigns that focus public attention on children with rare diseases and sensitize medical staff to their unique needs. This should lead to more rapid and precise diagnoses and treatments.
5. The Care-for-Rare Awards honor outstanding scientists who have already achieved success in the research of rare diseases.