by Feba Sam | Nov 15, 2018 | Rare Diseases |
In October, Ethan, Nina and I attended the 2018 Global Genes RARE Patient Advocacy Summit, held in Irvine, CA. This was the 7th annual gathering of rare disease patients, advocates, and researchers, and the largest gathering of the rare disease community worldwide....
by Jessica Lao | Oct 19, 2018 | Rare Diseases |
The 2018 Yeast Genetics Meeting (#Yeast18) was held in August at Stanford University in Palo Alto. I learned about the latest developments in research and advances in tools and technology, reconnected with former colleagues, and established new connections and...
by Naz Dana | Oct 4, 2018 | Rare Diseases |
The Global Genes 2018 RARE Patient Advocacy Summit – one of the key events in the rare disease world – wraps up today. As the largest worldwide gathering of rare disease patients, advocates, and thought leaders, the summit brought together over 100 experts, who led...
by Ethan Perlstein | Sep 7, 2018 | Rare Diseases |
Earlier this summer, I attended the Mitochondrial Medicine 2018 conference in Nashville. Hosted by the United Mitochondrial Disease Foundation (UMDF), the conference had attendees from almost every state in the US, and more than 15 countries around the world. A few...
by Jessica Lao | Aug 17, 2018 | Rare Diseases |
Last month, I attended the Phelan-McDermid Syndrome Foundation (PMSF) 2018 International Family Conference in Dallas, Texas. I would like to thank Abby Lievense Lagunoff for inviting me to PMSF 2018 – I enjoyed getting to know the PMS community, and really appreciated...
by Ethan Perlstein | Aug 11, 2018 | Rare Diseases |
In late June, I attended the Mucolipidosis Type IV Foundation’s ML4 Family and Research Conference in Atlanta. It was my first time attending and presenting at this intimate, biennial gathering of families, scientists and physician scientists, some of whom have known...
