International Gaucher Alliance
@IGAgaucherThe IGA represents the interests of Gaucher patients and non-profit Gaucher patient groups worldwide. Find us on Threads: https://t.co/Fv7UMsqkyv
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We are pausing our Twitter account and will no longer be posting here. Instead, follow us on Threads or one of our other social media channels. threads.net/@igagaucher
International Gaucher Day is Sunday. Follow us and share your own stories using the hashtags #IGD2023, #mydiagnosticjourney and #RareButNotAlone on Facebook, Instagram, Threads and Linkedin. More info: gaucheralliance.org/inter…The video link will go live at 4am UK time on 1 Oct.
La recherche contribue à améliorer la vie des patients atteints de la maladie de Gaucher neuronopathique. Les données du registre GARDIAN peuvent aider à orienter la recherche au profit des patients et de leurs soignants. Inscrivez-vous dès aujourd'hui sur gardianregistry.org/register
La información de GARDIAN nos ayuda a saber dónde se encuentran los pacientes y cómo es nuestra comunidad global de Gaucher neuropático. ¡GARDIAN ya está mostrando resultados y aún estás a tiempo de colaborar! Sumate al registro de GARDIAN hoy mismo en gardianregistry.org/register.
Research helps to make life better for MGn patients. Data from the GARDIAN registry can help guide research for the benefit of patients and their caregivers. Register today at gardianregistry.org/register
La meilleure compréhension de la maladie de Gaucher neuronopathique que nous obtenons grâce aux données de GARDIAN aide à créer de meilleures directives pour la gestion, le traitement et la prise en charge de cette maladie rare. Inscrivez-vous à GARDIAN: gardinaregistry.org/register.
La información de GARDIAN nos ayuda a saber dónde se encuentran los pacientes y cómo es nuestra comunidad global de Gaucher neuropático. ¡GARDIAN ya está mostrando resultados y aún estás a tiempo de colaborar! Sumate al registro de GARDIAN hoy mismo en gardianregistry.org/register.
The better understanding of neuronopathic Gaucher disease that we get from GARDIAN data helps to create better guidelines for the management, treatment and care of this rare disease. Help yourself and the entire community by registering for GARDIAN at gardinaregistry.org/register.
📷 Are you a #youngpatient advocate? 📷 Are you between the ages of 18 and 29? 📷 Are you passionate about building a better future for young patients? Then you may want to consider joining the EPF Youth Group! Applications open until 31 July. More info: bit.ly/3peL5ru
There are still a few days left to take part in this survey. We are urging all Gaucher patients and caregivers to do so. Take part here: bit.ly/newbornscreeni… Thank you.
La información de GARDIAN nos ayuda a saber dónde se encuentran los pacientes y cómo es nuestra comunidad global de Gaucher neuropático. ¡GARDIAN ya está mostrando resultados y aún estás a tiempo de colaborar! Sumate al registro de GARDIAN hoy mismo en gardianregistry.org/register.
GARDIAN peut nous aider à obtenir de meilleurs résultats lors de futurs essais cliniques. Aidez-nous à y parvenir. Inscrivez-vous sur gardianregistry.org/register.
GARDIAN can help us get better results from future clinical trials. Help make it happen. Register at gardianregistry.org/register.
La información de GARDIAN nos ayuda a saber dónde se encuentran los pacientes y cómo es nuestra comunidad global de Gaucher neuropático. ¡GARDIAN ya está mostrando resultados y aún estás a tiempo de colaborar! Sumate al registro de GARDIAN hoy mismo en gardianregistry.org/register.
The IGA is always looking to strengthen its voice when advocating for Gaucher patients. One of the ways you can help us is to register for GARDIAN. The data the registry gives us means we have more evidence to act on behalf of our community. gardianregistry.org/register.
There is still time to register for today's webinar which aims to give you more confidence when speaking about Gaucher disease. Register at bit.ly/janeskiwebinar
Please share this with anyone you know who can take part. We need a certain number of responses to have a Gaucher disease dashboard, and you can help us reach this threshold. The survey is available in 24 languages. bit.ly/newbornscreeni… for more information/link to survey.
Do you want to feel more confident when talking about Gaucher disease? There is still time to sign up for Friday's webinar which will help you with tips on speaking in public about Gaucher disease. Register at bit.ly/janeskiwebinar
Help us to get a better picture of the nGD community. Register for GARDIAN today! gardianregistry.org/register
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