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5 minutes can bring hope to 400 million people worldwide
Your tax-deductible gift makes it possible for our partners and team to continue providing information, resources, and connections to all communities affected by rare disease. 100% of your donation will help fund resources to strengthen our goal in eliminating the challenges faced by rare disease patients (more than 400 million worldwide).
Why Your Donation Matters
Meet Justin
It’s hard to see in this picture, but a year ago, Justin was fighting for his life following a double-lung transplant. Justin was born with pulmonary veno-occlusive disease—a genetic condition so rare, it affects less than 2 in 10 million people, according to the National Institutes of Health.
Meet The Kramer Family
{This is an excerpt of the letter that the Kramer family wrote to Global Genes and the CureGRIN Foundation, who was a recent recipient of our Continuity of Care Grant.}
“Thank you so much for choosing our family to be a recipient of this amazing grant. Andrew’s GRIN1 diagnosis has been the source of many issues he has dealt with already in his first 3 years of life. The past year has been most challenging in regards to his respiratory status, and issues breathing. He has been diagnosed with obstructive sleep apnea, nocturnal hypoxia, as well as having surgery to remove his tonsils, adenoids, and other reconstructive procedures to open his airways. None of the surgeries have helped, and several of his specialists have indicated that he is very close to needing a tracheotomy.
Meet Miriam
Sophia and Ross Zilber gave birth to a healthy baby girl on February 28, 2017. They named her Miriam. Shortly after, Sophia knew something didn’t seem right when she noticed Miriam was having trouble breastfeeding and her hand appeared puffy, as if there was fluid inside. Miriam’s doctor told the Zilbers that she wanted them to go to the hospital immediately. The doctors tested Miriam for a variety of infections, but the results kept coming back negative
Meet the Puerto Rican Association of Hemophilia and Bleeding Conditions
The Puerto Rican Association of Hemophilia and Bleeding Conditions was a recipient of our Continuity of Care grant. Their mission is to support patients with hemophilia and other bleeding conditions, promoting education to improve their quality of life; demanding a higher level of medical care. In 2020, Puerto Rico was devastated by the affects of COVID-19