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Closing the Information Gap: Chronic Disease, Pregnancy, and Breastfeeding

We are calling for a paradigm shift in the pregnancy and breastfeeding journey for women living with a chronic disease. We envision a world where women are equipped with the information that matters most to them. A world where women’s care – and their experiences of care – respects their choices about their health.


What will it take to generate the data that women and their health care team need?


How can we ensure that data are available, interpreted in a balanced and individualized way, and communicated clearly?

Prioritizing the inclusion of pregnant and breastfeeding women in research is long overdue. The status quo, in which women are routinely excluded from biomedical research, can no longer be tolerated. The change we seek will require fundamental shifts:

Fundamental Shifts

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Our report provides background information and detailed recommendations for different stakeholders.

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Challenges Women Face

The scarcity of data and the lack of high-quality data on chronic disease and pregnancy has far-reaching consequences. Women in every corner of the globe suffer from limited information about how their treatment for a chronic illness may affect a current or future pregnancy, or breastfeeding.

Challenges Women Face

Our Core Principles

Our Core Principals

What we do


Data Generation

  • Invest in research that focuses specifically on the particular issues that women confront in managing chronic disease throughout their reproductive journey.
  • Promote and facilitate women’s participation in clinical trials, registries, and other studies to generate the data needed to make strong, evidence-based, and individualized recommendations about the impact of chronic disease treatment on pregnancy and breastfeeding.

There's a notion that pregnant women or breastfeeding moms should not undergo clinical trials, but neglecting the condition might lead to worse effect and hinder the mother more than help her. - Hellen, living with psoriasis, (Kenya)

What we do

Data Availability, Interpretation, and Communication

  • Make sure that women have access to relevant, contextualized information about chronic disease treatment and pregnancy and breastfeeding, and that health providers communicate this information in an understandable, supportive, and individualized way to patients before they become pregnant.

It’s important to train doctors to ask their patients about their plans for a family. Many doctors don’t ask that question at all and decide on a medical treatment without knowing what plans the woman has for a family. -  Karina, living with psoriasis, (Peruvian residing in Estonia)

Now is the time to create a culture of support and inclusion for women living with chronic disease who become pregnant or breastfeed. By elevating women’s voices and maintaining a focus on their rights, needs, and values, we can reach this pivotal and essential milestone.

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