ICP Care Launches International Patient Registry

ICP Care Launches International Patient Registry to Advance Understanding and Treatment of Intrahepatic Cholestasis of Pregnancy

[Miami, March 1, 2023] – Intrahepatic Cholestasis of Pregnancy (ICP) poses a significant risk to expectant mothers and their babies, with potential complications including stillbirth if left undiagnosed or untreated. Despite its rarity, affecting approximately 0.3-0.5% of pregnancies, many individuals remain unaware of the signs and risks associated with this liver disorder. In response to the urgent need for enhanced research and awareness, ICP Care, a leading non-profit organization dedicated to preventing stillbirth and saving babies’ lives in pregnancies affected by high-risk conditions, is proud to announce the launch of its International Patient Registry for Intrahepatic Cholestasis of Pregnancy.

ICP Care’s Patient Registry represents a crucial step forward in understanding and addressing the complexities of ICP. Open to individuals worldwide with a current or past diagnosis of the condition, the registry aims to gather comprehensive data to inform more effective treatment strategies and improve outcomes for both mothers and babies. Participants will provide essential information about their medical history, family background, and pregnancy experiences, empowering researchers to make informed decisions about optimal care.

We recognize the urgent need for further research into Intrahepatic Cholestasis of Pregnancy, particularly in cases of early onset and multiple pregnancies,” says Dr. Laura Bonebrake MD, FACOG, Medical Advisory Board Member of ICP Care. “Through our Patient Registry, we aim to unite individuals affected by this condition, clinicians, and researchers to drive meaningful advancements in understanding and treatment.”

ICP Care’s dedication to supporting those impacted by ICP extends beyond the registry. With a board comprising individuals who have firsthand experience with the disorder and a robust support network, the organization is committed to fostering empowerment and community among patients and caregivers alike.

We understand the power of collective action in addressing rare diseases like ICP,” adds Dr. Laura Bonebrake. “By joining forces through initiatives like our Patient Registry, we can work towards preventing stillbirth and ensuring healthier outcomes for families affected by Intrahepatic Cholestasis of Pregnancy.”

Clinicians are encouraged to refer patients diagnosed with ICP to the Patient Registry and to share information about this vital resource with their professional networks. Members of the public can support ICP Care’s mission by spreading awareness of the registry and its importance in preventing stillbirth.

To register for the Patient Registry or learn more about ICP Care’s initiatives, please visit https://icpcare.org/about/impact/. Together, we can make a difference in the lives of families affected by Intrahepatic Cholestasis of Pregnancy.

About ICP Care:

ICP Care is a 501(c)(3) non-profit organization founded in 2014 by Donna Benavides in memory of her son, Jorden, who tragically lost his life to Intrahepatic Cholestasis of Pregnancy. Dedicated to preventing stillbirth through advocacy and awareness, ICP Care provides support, resources, and education to individuals affected by this high-risk condition. ICP Care holds a Platinum Transparency with Guidestar/Candid. ICP Care also holds a top rated badge from GreatNonprofits. ICP Care is committed to improve the lives of individuals and families impacted by ICP. For more information, please visit https://icpcare.org

For media inquiries or interview requests, please contact:

Meredith Zadd
Board Member
ICP Care
meredith.zadd@icpcare.org

Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.

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Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.