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
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
#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
May is Ichthyosis Awareness Month!
Patagonia is proud to support Ichthyosis Awareness Month! Ichthyosis is a rare skin disease that is characterized by dry, thickened, scaling skin. With almost 30 genetic subtypes, this condition impacts the lives of individuals across the globe. During this month, we encourage you to take the time to learn more about the disease. FIRST, the "Foundation for Ichthyosis and Related Skin Types", is an active patient advocacy group dedicated to educating, inspiring, and connecti
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
AAD and the Dermatology Entrepreneurship Conference in San Francisco
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. #aad #dermatology #entrepreneurs #raredisease #orphandrugs #pharmaceuticals #sanfrancisco #healthcare #ichthyosis #biotech
Meet us at DCAT
Patagonia Pharmaceuticals will be in NYC from March 16 - 17 for DCAT . Please let us know if you'd like to schedule a meeting. #dcat #pharmaceuticals #orphandrugs #dermatology #skin #ichthyosis #nyc #patagonia #rarediseases #newyork
One Month Until Rare Disease Day
Rare Disease Day is just one month away. EURODIS first launched the campaign in 2008, and it has quickly grown into a global movement. The main objective is to “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.” On February 28, there will be various activities and events around the world dedicated to supporting rare communities. Please visit www.rarediseaseday.org/events/world to see what is going on in
