December 15, 2015

Specialty adult and pediatric ichthyosis clinic at Massachusetts General Hospital is now open. For more details, please direct yourself to the link below:

 

http://www.firstskinfoundation.org/news-details.cfm/Ichthyosis-News/Ichthyosis-Clinic-at-Massachusetts-General-Now-Open/id/305

December 3, 2015

FIRST, in collaboration with Positive Exposure, released a great video this week that highlights congenital ichthyosis from the patient perspective.  It is used as an educational tool in medical communities, worldwide, to not only raise awareness, but to provide a better understanding of the needs of individuals...

November 5, 2015

EvaluatePharma has just released their Orphan Drug Report 2015.  This free report contains tons of great information on the current state of the market.  A few highlights below:

 

- Median cost per patient differential is 13.8 times higher for orphan drugs compared to non-orphan

- Phase III orphan drug develop...

September 16, 2015

Jonathan Goldsmith, M.D., F.A.C.P., FDA’s Associate Director, Rare Diseases Program, Center for Drug Evaluation and Research, comments on the recently released draft guidance for industry on rare disease drug development.  Given the complexity and challenges of developing and bringing to market new FDA-approved...

August 26, 2015

We're excited to attend the fifth annual Bourne Partners Global Healthcare Executive Summit in Charlotte, North Carolina on September 2nd-3rd.  This event features top executives participating in a variety of panel discussions regarding healthcare and pharmaceutical issues and trends, as well as opportunities fo...

August 19, 2015

We talk about the FIRST organization quite a bit here at Patagonia.  They are an incredible resource for patients and supporters.  To learn more about their organization, check out their newly released video: https://www.youtube.com/watch?v=8laUeY_i9XM

August 10, 2015

Tim Boyd, NORD's Associate Director of State Policy, is finishing up a cross country journey this week.  He has traversed over 4,000 miles, meeting with NORD members and Rare Action Network™ advocates throughout the United States.  

 

Don't forget to join the road trip on Twitter with #RareAction

 

To...

June 23, 2015

Patagonia supports the amazing work of Global Genes, and we encourage you to support their latest video campaign.  The #15ForRARE Campaign is a social media video movement highlighting the individual voice in the rare community. To learn more and enter for a chance to win, please visit the following link: http:/...

March 12, 2015

Last year $1.4 million was raised at the UPenn Orphan Disease Center's Million Dollar Bike Ride, 100% of which went to rare disease research.  Get your spandex on, pick a team, and help break that record! Early bird registration ends April 1.  

 

Sign up here: http://www.milliondollarbikeride.org/

 

February 26, 2015

We'll be at the Dermatology Entrepreneurship Conference on March 19 and at the American Academy of Dermatology's Annual Meeting from March 20 - 23.  Both shows are in San Francisco.  Please let us know if you would like to meet. 

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