International Fabry Women’s Day
Every first Saturday in April is International Fabry Women’s Day.
The Dutch patient association initiated the Fabry Women’s Day in 2005.
In 2013 FSIGN (Fabry Support & Informatie Groep Nederland) declared it International Fabry Women’s Day.
This is proving to be a great success worldwide, we have already received responses from various parts of the world. We hope that many countries will follow. Our goal has been achieved: women with Fabry are no longer seen as just “carriers”.
Even patient organizations for other diseases followed our example, because it is our experience that women like to share feelings and experiences with each other. These meetings are experienced as a warm bath.
You don’t have to explain anything to anyone, everyone understands what you say without having to explain it.
We are pleased to see that the pharmaceutical industry is also paying more attention to the position of women with Fabry. Twice a year, the FSIGN board meets with all companies that have a drug on the market or in development for Fabry, partly to put this topic on their agenda! And this has proven to be successful!
The activities that we as a patient association organize, are highly appreciated and attended by more and more women with Fabry, as well as their partners, daughters, mothers or friends.
FSIGN has the opportunity to do this, because we, as a patient association in the Netherlands, receive a subsidy from the government. Unfortunately, we know that this is not the case for all patient associations.
Especially during this particular time, when we cannot meet in person so easily, it would be nice to start with a digital meeting. You can even create a group on WhatsApp or Signal, and have a video call. Just give it a try with a few women from your patient group and you will be amazed by all the stories and positive feedback.
And when it is possible again, face-to-face meetings do not have to be expensive to be enjoyed. We also started our first get-togethers with just a cup of coffee or tea and something sweet.
Our days are usually all about laughing and crying together, sharing experiences, joy, letting go, but above all holding on to each other. meanwhile we are working intuitively and creatively.
Here is a list (and examples for you) of the activities we organized over the years:
- Chain mail jewelry workshop
- Wire working workshop
- Baking and decorating cakes
- Creating a collage from old magazines
- Singing songs together with an accordionist over coffee
- Pampering day because of 10 year Fabry Women’s Day
- Invite a professional photographer to take beautiful portrait photos of the participants
- And the list goes on…
Happy International Fabry Women’s Day!
Annelies Sweeb – Erica van de Mheen
The Fabry Women’s Day logo can be used by everyone, if you need a copy, please reach out to firstname.lastname@example.org