FSIGN_2001's profile picture. Fabry Support & Informatie Groep Nederland is een onhafhankelijke patiëntenvereniging voor mensen met de ziekte van Fabry

FSIGN

@FSIGN_2001

Fabry Support & Informatie Groep Nederland is een onhafhankelijke patiëntenvereniging voor mensen met de ziekte van Fabry

FSIGN reposted

Happy International Fabry Women's Day. Started by the Dutch Fabry organization FSIGN, join us in celebrating this special day on the first Saturday of April. #internationalfabrywomensday, #everyfirstsaturdayinapril, #fabrydisease, #1fdsm

FabryOrg's tweet image. Happy International Fabry Women's Day. Started by the Dutch Fabry organization FSIGN, join us in celebrating this special day on the first Saturday of April.  #internationalfabrywomensday, #everyfirstsaturdayinapril, #fabrydisease, #1fdsm

FSIGN reposted

Today is International Fabry Women's Day! For years, Fabry was considered an X-linked recessive disease where females were carriers but would not have symptoms. That myth lingers in medical literature causing some females to struggle to get adequate care. tinyurl.com/Fabry-Focus-E-…

FabryDisease1's tweet image. Today is International Fabry Women's Day! For years, Fabry was considered an X-linked recessive disease where females were carriers but would not have symptoms. That myth lingers in medical literature causing some females to struggle to get adequate care. tinyurl.com/Fabry-Focus-E-…

FSIGN reposted

This April we focus on helping parents recognise #Fabry symptoms in their children. 😅💙 #CoolDownFabry is all about the link between #HeatIntolerance and #FabryDisease. Visit CoolDownFabry.com and find find out why kids like Julia aren’t always fond of sunny days.

fabryintnetwork's tweet image. This April we focus on helping parents recognise #Fabry symptoms in their children. 😅💙 #CoolDownFabry is all about the link between #HeatIntolerance and #FabryDisease. Visit CoolDownFabry.com and find find out why kids like Julia aren’t always fond of sunny days.

FSIGN reposted

Hi everyone, Today is the beginning of Fabry disease awareness month. During April, we will provide frequent posts about Fabry disease and about various programs. See fabrydisease.org/index.php/prog…. Jerry Walter

FabryDisease1's tweet image. Hi everyone,

Today is the beginning of Fabry disease awareness month. During April, we will provide frequent posts about Fabry disease and about various programs.
See fabrydisease.org/index.php/prog…. 

Jerry Walter

FSIGN reposted

TODAY is #RareDiseaseDay! 💙💚💜 All over the world, the rare disease community are sharing their colours and demanding equity for people living with a rare disease. As a global community, we have a powerful voice! 📣 How are you sharing your colours today? 👇👇👇

rarediseaseday's tweet image. TODAY is #RareDiseaseDay! 💙💚💜

All over the world, the rare disease community are sharing their colours and demanding equity for people living with a rare disease. 

As a global community, we have a powerful voice! 📣 

How are you sharing your colours today?  👇👇👇

FSIGN reposted

Vandaag is de dag van de Mantelzorg! Zorg jij voor een naaste die langdurig ziek is, een beperking of psychische problemen heeft of hulpbehoevend is? Dan ben jij mantelzorger. Vaak onzichtbaar, maar zo onmisbaar...

Nog een paar dagen en dan is het 10 november: Dag van de Mantelzorg. Dan zetten we de spotlight op mantelzorgers, want hun vaak onzichtbare zorg mag gezien worden! Doe je ook mee? Kijk op bit.ly/2KmMeI0. #DagVanDeMantelzorg #mantelzorg #OnzichtbareHelden

MantelzorgNL's tweet image. Nog een paar dagen en dan is het 10 november: Dag van de Mantelzorg. Dan zetten we de spotlight op mantelzorgers, want hun vaak onzichtbare zorg mag gezien worden! Doe je ook mee? Kijk op bit.ly/2KmMeI0.

#DagVanDeMantelzorg #mantelzorg #OnzichtbareHelden


FSIGN reposted

Enter now for the 2022 Photo Award, and share your photos of life with a rare disease with the rare disease community and beyond! 📸 l.eurordis.org/xeZQ

eurordis's tweet image. Enter now for the 2022 Photo Award, and share your photos of life with a rare disease with the rare disease community and beyond! 📸

l.eurordis.org/xeZQ

FSIGN reposted

Woon je in een sociale huurwoning met een hoge huur en heb je een laag inkomen? Check of je recht hebt op de eenmalige huurverlaging van 2021. Lees hier meer: iederin.nl/huurverlaging-… #Huurverlaging #Geldzaken #Koopkracht @Woonbond


FSIGN reposted

"I think more people need to realise that just because you can’t see it doesn’t mean it’s not there.” Gabby's journey through diagnosis🩺 wasn't taken seriously on several occasions. Have you ever felt the same? #RareDiseaseDay Tell us your story! 👉 rarediseaseday.org/tell-your-story

rarediseaseday's tweet image. "I think more people need to realise that just because you can’t see it doesn’t mean it’s not there.”

Gabby's journey through diagnosis🩺 wasn't taken seriously on several occasions. Have you ever felt the same? #RareDiseaseDay

Tell us your story! 👉 rarediseaseday.org/tell-your-story

Ook vandaag vieren wij weer onze internationale Fabry vrouwendag. #Internationalfabrywomensday#Fabry


FSIGN reposted
FSIGN_2001's tweet image.

FSIGN reposted

April is Fabry Disease Awareness Month. Starting April 1st pls RT our daily awareness tweets. A better understanding of Fabry disease can lead to a better future for so many. Subscribe to our e-news visitor.r20.constantcontact.com/manage/optin?v…. Follow us on twitter and fb facebook.com/FabryDisease.

FabryDisease1's tweet image. April is Fabry Disease Awareness Month. Starting April 1st pls RT our daily awareness tweets. A better understanding of Fabry disease can lead to a better future for so many. Subscribe to our e-news  visitor.r20.constantcontact.com/manage/optin?v…. Follow us on twitter and fb facebook.com/FabryDisease.

Vanmorgen via een digitale meeting gevierd dat FSIGN 20 jaar bestaat. #lustrum #feestje


FSIGN reposted

February 28th is Rare Disease Day! Bringing awareness is so important. 1 out of 20 people will be affected by a rare disease and many of these diseases don't have a cure yet. If interested in learning more about this special day, go here: rarediseaseday.org

FabryOrg's tweet image. February 28th is Rare Disease Day! Bringing awareness is so important. 1 out of 20 people will be affected by a rare disease and many of these diseases don't have a cure yet. 
If interested in learning more about this special day, go here: rarediseaseday.org

FSIGN reposted

Wow! The official #RareDiseaseDay video is available in 40 languages 🗺️ Click on the image to discover in which ones! 💬 Share your support and let us know your native language in the comments 👇

rarediseaseday's tweet image. Wow! The official #RareDiseaseDay video is available in 40 languages 🗺️
 
Click on the image to discover in which ones! 💬 
 
Share your support and let us know your native language in the comments 👇

FSIGN reposted

Prachtige beschrijving van hoe chronische ziekte werkt. #lepeltheorie.

Nog een paar dagen en dan is het 10 november: Dag van de Mantelzorg. Dan zetten we de spotlight op mantelzorgers, want hun vaak onzichtbare zorg mag gezien worden! Doe je ook mee? Kijk op bit.ly/2KmMeI0. #DagVanDeMantelzorg #mantelzorg #OnzichtbareHelden

MantelzorgNL's tweet image. Nog een paar dagen en dan is het 10 november: Dag van de Mantelzorg. Dan zetten we de spotlight op mantelzorgers, want hun vaak onzichtbare zorg mag gezien worden! Doe je ook mee? Kijk op bit.ly/2KmMeI0.

#DagVanDeMantelzorg #mantelzorg #OnzichtbareHelden


FSIGN reposted

Heb je het al gelezen op onze website? In samenwerking met AxelFoundation en YogaLife willen we alle mensen die te maken hebben met stofwisselingsziekten, een online cadeautje geven. Dit doen we in de vorm van 3… instagram.com/p/CEUE7_ZDxOr/…


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