Today February 28, 2023 is Rare Disease Day!
A Disease is RARE when it affects fewer than 1 in 2,000. In the USA 1 to 2 pregnancies in 1,000 is affected by Intrahepatic Cholestasis of Pregnancy. Intrahepatic Cholestasis of Pregnancy (ICP) is a family of liver disorders that occur only during pregnancy and are characterized by elevated bile acids in the patient’s blood. ICP can pose stillbirth risk to the unborn baby.
Annually the month of February dedicated to Rare Liver Diseases an all-inclusive, collaborative campaign that aims to promote awareness and educate the public about a diverse range of rare liver diseases through insightful discussions, health policies, education, and advocacy. Rare Liver Diseases Month elevates the voices of the rare liver disease community and empowers rare liver disease advocates with the tools to make a positive difference in their lives and communities.
These are a few ways to get involved:
- Share your story on social media or submit your ICP story to be shared
- Share an ICP Care social media post and/or story
- Watch our Educational videos and ICP warrior stories
- Get involved and volunteer
- Donate to https://www.paypal.com/us/fundraiser/charity/2010854
Watch our team members speak about the impact advocacy has for ICP, the effect on parents and partners and the provider perspective with Donna Cryer, CEO of the Global Live Institute
*Patient Advocacy: Donna Benavides, ICP Care Founder on the critical role patient advocacy has on improving the landscape for Rare Disease
*Parents & Partners: Guadalupe, PA Ambassador
*Provider perspective on patient access. Laura Bonebrake, Medical Advisory Board OBGYN
