Las Vegas Art2 Downtown Arts Festival Held in Honor of GBS-CIDP International Foundation


The Art² Downtown Arts Festival with be a one-day art festival celebrating the best independent artist, craftsmen, and designers from around the Las Vegas Valley. Nestled in the heart of the 18b Arts District in downtown Las Vegas, Art² seeks to combine art with community activism. The first annual Art2 Downtown Arts Festival will be held Saturday, November 15, 2014, from 10:00 a.m. to 7:00 … [more here...]

“How Can We Incorporate the Patient’s Voice?” Mass. Biotech Hosts Conference on Nov 10th

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The Massachusetts Biotechnology Council is hosting a conference this November 11th, 2015. The organization is an association of more than 650 … [more here...]

The Daily Pilot Reports on Global Genes 2014 Gala


Here are some sobering facts. Despite all of the advances in science and medicine, more than 7,000 types of rare diseases affect the human … [more here...]

Rare Disease Report: Five Myths That Slow Down Clinical Trial Enrollment

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Melissa Hogan, founder of Saving Case – an organization designed to help raise awareness of Hunter syndrome and engage people in the rare disease … [more here...]

Today: RDLA Holds Afternoon Conference Call/Luncheon

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October Luncheon/Conference Call Thursday, October 16, 2014: 12:00 noon to 1:00 pm RDLA Offices: 1101 14th street NW, Suite 700, Washington … [more here...]

Multifocal Motor Neuropathy: Where Were the Resources?


The best way to explain the onset of Multifocal Motor Neuropathy is like someone had flipped a switch and all the electricity containing those very … [more here...]

NIH Funds Research Consortia to Study More Than 200 Rare Diseases

Adam L. Boxer, M.D., Ph.D., who leads the RDCRN-supported Frontotemporal Lobar Degeneration (FTLD) Clinical Research Consortium, is exploring a group of progressive brain diseases that damage brain networks controlling behavior, cognition and movement. This image illustrates severe brain tissue loss over one year for patients with two types of FTLD: behavioral variant frontotemporal dementia (red-yellow) and progressive supranuclear palsy (yellow, orange and blue). (S. Dutt, H. Rosen, A. Boxer Photo)

Physician scientists at 22 consortia will collaborate with representatives of 98 patient advocacy groups to advance clinical research and investigate … [more here...]