May is Ichthyosis Awareness Month!
We are so excited to support and promote Ichthyosis Awareness Month (IAM)! For more information and a list of all the amazing ways you can get involved, please review the FIRST website at http://www.firstskinfoundation.org/ichthyosis-awareness-month #IchthyosisAwarenessMonth #ichthyosis #raredisease #orphandisease #patagonia
Ichthyosis Clinic at Massachusetts General Now Open
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 #hospital #ichthyosis #disease #raredisease #dermatology #skin #massachusetts #clinic
FRAME Ichthyosis: A collaboration between the FIRST community and the Positive Exposure organization
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 born with ichthyosis. I encourage you to take a few moments to watch here. http://vimeo.com/131776259 #ichthyosis #first #raredisease #dermatology #medical #education
Worldwide orphan drug sales forecast to total $178bn in 2020
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 development costs half that of non-orphan but Phase III drug development - Worldwide orphan drug sales forecast to total $178bn (CAGR 2015 to 2020: +11.7%); nearly double the ove
FDA Comments on Recently Released Rare Disease Guidance for Industry
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Associate Director, Rare Diseases Program, Center for Drug Evaluation and Research, comments on the recently released draft guidance for industry on rare disease drug development.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 drugs to treat rare diseases, we're excited to see this topic garnering more support. Read more here: http://blogs.fda.gov/fdavoice/index.php/2015/09/another-tool-help
Patagonia team attending the Bourne Partners Global Healthcare Executive Summit next week!
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 for attendees to interact one-on-one with industry leaders and innovators. If you will be attending and woudl like to schedule a meeting, please send an email to info@pa
Who is the Foundation for Ichthyosis and Related Skin Types (FIRST)?
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 #first #ichthyosis #raredisease #skin #video #nonprofit #foundation #patagonia #patient
Best of luck to Tim Boyd on his Rare Action Road Tour!
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 learn more about Tim's trip, check out the link: http://rarediseases.org/rare-action-road-tour/ #rareaction #rareactionroadtour #rareactionnetwork #nord #raredisease
#15forRare Campaign
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://globalgenes.org/15forrare. Why do you "Care about RARE?" #15forrare #globalgenes #raredisease #ichthyosis
Gear up for the Million Dollar Bike Ride
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/ #milliondollarbikeride #raredisease #upenn #orphandiseasecenter #university #pennsylvania #universityofpennsylvania #charity #fundraising #drugresearch #ichthyosis #orphanproducts
