Sano blog | rare disease (6)

rare disease patient engagement

Modernizing rare disease trials with patient-centered innovation

While there have been significant strides in the development of drugs for rare diseases over the past few decades, only 5% of rare diseases have FDA-approved tr...

precision medicine rare disease podcast recap

Podcast recap: Kent Rogers on building a path for N-of-1 therapies and transforming rare disease treatment

In a recent episode of The Genetics Podcast, Patrick spoke with Kent Rogers, CEO of EveryONE Medicines, about the future of individualized medicines, especially...

rare disease genetic testing podcast recap

Podcast recap: Matt Burgess on genetic counseling, ethics in rare disease, and demystifying genetics

In the most recent episode of The Genetics Podcast, Patrick sits down with fellow podcaster and genetic counselor Matt Burgess. Matt is the host of Demystifying...

precision medicine genetic epidemiology rare disease

Building better data ecosystems for rare and ultra-rare conditions

In rare and ultra-rare diseases, data availability is one of the most significant constraints in research and drug development. With thousands of rare condition...

rare disease podcast recap patient engagement

Podcast recap: Sharon Terry on patient-led research, biobanking, and the future of rare disease advocacy

In the latest episode of The Genetics Podcast, host Patrick Short sat down with Sharon Terry, the CEO of Genetic Alliance, to discuss her extraordinary journey ...

Overcoming barriers to genetic hearing loss treatment

rare disease genetic testing health equity

Overcoming barriers to gene therapy for genetic hearing loss

Despite the huge potential of new technologies to enable precision approaches to diagnosing, managing, and treating genetic hearing loss, significant barriers a...

Dr. Anthony Bleyer and Prof. Stan Kmoch on genetic kidney disease and rare disease research

rare disease genetic testing podcast recap

Podcast recap: Anthony Bleyer and Stan Kmoch on hunting rare kidney disease mutations

In the most recent episode of The Genetics Podcast, Patrick Short sits down with Dr. Anthony Bleyer, Professor of Medicine at Wake Forest University, and Stan K...

rare disease podcast recap

Podcast recap: Michelle Werner on tRNA therapeutics, basket trials, and innovation in rare disease

In a recent episode of The Genetics Podcast, Patrick sat down with Michelle Werner, CEO of Alltrna and CEO Partner at Flagship Pioneering. If you’ve been follow...

patient recruitment rare disease

Clinical trial recruitment: Conversion and compliance

Most clinical trials fail to recruit enough participants on time. In rare disease and genetically stratified studies, the challenge is compounded: the patient p...

patient recruitment rare disease genetic testing

Key takeaways from an important conversation about IRD research

On October 18th, 2024 20/20 Onsite, Sano Genetics, and Clinical Enrollment announced the launch of a new partnership to offer a comprehensive solution for ident...

Clinical research blog