简体中文
EnglishWhat Is ICP Care and What Does the Organization Do?
Updated
ICP Care is a nonprofit organization focused on Intrahepatic Cholestasis of Pregnancy (ICP). Its stated mission is to protect pregnancies, families, and unborn babies from ICP. If you or someone you know has been diagnosed with ICP, the organization offers research-based information, a supportive online community, and a patient registry that contributes to research. Its tagline, "Fight the Itch. Save a Life," reflects its focus on symptom awareness and preventing outcomes such as stillbirth.
What ICP Care Provides
Research-Based Information You Can Share
ICP Care publishes information about ICP that you can download, print, and share with healthcare providers. This is useful when you want a concise, citable summary to bring to an appointment rather than relying on memory or scattered sources.
The site also covers practical self-care topics, including healthy diet recommendations during pregnancy. The organization notes that a healthy diet supports the baby's health and development and may help some people manage ICP symptoms.
A Supportive Community and Support Groups
An ICP diagnosis can feel overwhelming, scary, and isolating. ICP Care runs a supportive online community and support groups so people with the same diagnosis can connect with each other. If you are looking for peer experience rather than clinical guidance, this is the part of the organization to explore first.
The ICP Patient Registry (Open Internationally)
ICP Care operates a patient registry that is open internationally. Participants share their pregnancy journey to support research into ICP. Because ICP is a rare disease, the organization's position is that more participants means more can be learned to improve care, treatment, and support. If you want your experience to contribute to research, this is the direct route.
Topics ICP Care Addresses
| Topic | What the organization says |
|---|---|
| Twin pregnancies | ICP is thought to have a hormonal cause, so it is more likely in twin pregnancies due to higher hormone levels. Rates in twin pregnancies are between 20–25%, compared with about 0.3–0.5% in singleton pregnancies. |
| Pregnancy and infant loss | ICP Care marks October as Pregnancy and Infant Loss Awareness Month and honors babies lost, including those of ICP Care members. |
| Stillbirth prevention | The organization frames its work around a future where no baby is lost to a preventable stillbirth. |
Ways to Engage
- Get information: Download and print ICP materials to share with your healthcare provider.
- Find support: Join the online community or a support group.
- Contribute to research: Enroll in the ICP Patient Registry, which is open internationally.
- Stay informed: Sign up for the newsletter for updates on the mission, events, and volunteer opportunities.
- Support the work: The site accepts donations and references a 10-year anniversary fundraising goal.
Who This Is For
ICP Care is aimed at people diagnosed with ICP, their families, and anyone seeking research-based information to bring to a healthcare provider. It is an information and support organization, not a substitute for medical care. For diagnosis, treatment decisions, or management of your specific pregnancy, work with your healthcare team and use ICP Care's materials as a supplement to those conversations.