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
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
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
