Navigating Clinical Trials: A Guide for Rare Disease Patients

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Navigating Clinical Trials: A Guide for Rare Disease Patients

A condition is defined as a rare disease if it affects fewer than 200,000 individuals. Approximately 7,000 conditions meet this definition. In 2016, the United States Food and Drug Administration awarded $23 million dollars towards a four year period that supported research for 21 different rare diseases. However, most rare diseases lack disease-modifying therapies or effective medications for several reasons…

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AI in Healthcare: Revolutionizing Genomic Sequencing and Rare Disease Treatment

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AI in Healthcare: Revolutionizing Genomic Sequencing and Rare Disease Treatment

In recent years, artificial intelligence (AI) has made significant strides across various industries, but its impact on healthcare, particularly in the realm of genomic sequencing and rare disease research, is transformative. As we continue to navigate the complexities of the thousands of rare diseases affecting millions worldwide, AI offers unprecedented opportunities to revolutionize diagnosis, treatment, and patient care.

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CALL TO ACTION: Joaquin has diagnosis, now he needs a cure

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After six intense years of fighting against an unknown disease that burst into Joaquin's life at three years of age, and performing all the necessary exams to identify the disease and failing in each of them, Joaquin was diagnosed in March of 2017 through Rare Genomics’ philanthropic program iHope with Illumina.

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Recruiting Now: Amplify Hope Initiative: Studying Crowdfunding for Exome Sequencing

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RG is currently recruiting patients needing help with funding for exome sequencing for participation in our Amplify Hope initiative, a Templeton grant-funded study to measure the effectiveness of different methods of crowdfunding. Participants and their families will be given training on crowdfunding, and then launch a campaign for sequencing. RG has worked with our sequencing site partners to offer savings for all participants. To learn more, visit our Amplify Hope website.