Survey for women to help us understand how living with FH or HoFH

2022. június 3.

Dear All,

I am reaching out to you with an important research invitation. As you may recall on the occasion of the international women’s day in 2021 together with many of the women from our Network we hosted 2 webinars and some social media awareness activities focused on women’s cardiovascular health. We also announced an ambition to launch a survey for women to help us understand how living with FH or HoFH affected women’s health, their family planning decisions and also how pregnancy and breast feeding impacts their treatment and vice versa. Today, after some reviews by many of you and additional planning, I am pleased to bring the long awaited updates. (See attached).

This survey (for now in ENGLISH) has been created based on a pitot survey conducted in Norway with the Norwegian patient organization. It was designed by Prof Kirsten Holven and Prof Jeanine Roeters van Lennep and their teams, reviewed by an international group of women living with FH and HoFH from our Network. (thank you Ladies).

The aim is to get a better, more meaningful understanding of the impact FH and HoFH has on women, their family planning decisions (for or against pregnancy), treatment decisions and advice given by their doctors, impact it may have on breast feeding decisions, and in consequences the potential loss of time (months, years) of treatment – which translates into further cardiovascular health outcomes. Please see the full attached statement.

The goal is to reach 1000 women living with FH or HoFH internationally to respond to this survey. We will therefore continue as long as we reach this milestone. In the process we would like to host educational webinars, also with you included, in your languages, aimed at educating people in your local communities about the issues, as well as opportunities for women with FH and HoFH.

ACTION:

All of that will only be possible with your active participation as a patient organization leader, a patient ambassador or a clinician, who wishes to better care for your female patients. To make it easier, here is 2 actions we would like to ask of you.

Let us know if this project interests you, if so – how would you like to be involved (respond to the survey, disseminate the survey, be an ambassadors for the project, speak at a webinar, support it with your organizational logo) and what do you need from us to help you (have it translated into your language, receive more content, receive visuals to promote it).

In the meantime please visit:

The findings from the survey will serve as evidence for better education, awareness and decisions, they will hopefully help drive better informed choices for women and their healthcare professionals. The findings will be shared in a relevant format – a scientific publication to educate clinicians, a policy paper to influence policy makers on potential required actions, key messages to help raise awareness of FH and HoFH in women and how to better protect their cardiovascular health.

We look forward to hearing from you,

Magda, Kirsten, Jeanine