HAE Junior

Calling on the HAE patient community to make their voice heard on the topic of access to clinical trials abroad as part of the EU-X-CT patient survey. Links to the patient/caregivers questionnaire forms in multiple European languages (including Czech) are available below 👇🏻

We have great news for the Czech HAE patient community! 😎🥳 The HAE International’s guidebook 'Women with HAE'👩🏼 is now available in Czech in our Infocentre on HAE Junior website. Czech patients will find there information on topics such as adolescence, family planning, pregnancy and menopause in the context of HAE. This is the 4th educational material, published by HAEi, which we have translated into Czech. For more information about the guidebook, please see our new article (in Czech only): https://lnkd.in/eD8Q_fh5

It is with deep sadness that we received the news of the passing of Professor Marcus Maurer from Charité Hospital in Berlin. Professor Maurer was not only an exceptional scientist, but also an inspirational mentor who gave us hope and motivation in growing stronger than HAE. His work and approach have impacted many of our lives, and we will always remember him with respect and gratitude. If you would like to share your memories or express your condolences, you can do so through the digital book of condolences: https://lnkd.in/dEn9gGVn. Many tHAEnks for everything, Marcus Maurer, may your soul rest in peace!

After a beautiful summer break☀, the new school year is about to start again. We wish all HAE juniors a successful return to school and best of luck to all new schoolchildren :-)🏫 Please, find some inspiration and practical tips on how to manage school without problems or absences due to HAE in our older article: https://rb.gy/3ja4od We'd also like to remind you that we continue to collect pictures and drawings for the next HAE Junior Art Exhibition themed 🎭 "My Inspiration": https://lnkd.in/ezT6V-wa Good luck🍀 with the new school year and we're looking forward to seeing your entries for the exhibition!

🇨🇿 News from around the world The theme at the Czech HAE Junior Educational Camp 2024, ‘Our Super Siblings’, emphasized the importance of strengthening family bonds among young patients. Camelia C. Isaic from HAE Junior z.s. tells us about the camp and other exciting activities of the organization in the latest edition of Global Perspectives. Read more about it all in the article on our website 👉👉 https://buff.ly/3AlLptG Want to read more news from our member countries? Please visit our website: Member Countries 👉👉 https://buff.ly/3snBD64 Global Perspectives 👉👉 https://buff.ly/2XeIJbO

We wish all HAE juniors, their friends and families a wonderful summer break full of sunshine, leisure and fun, spent in good health and with beloved people ☀🤸🏻♀️✈⛵🏊🏼♂️ Over the summer, we're also taking a little break from posting on our social media. Hence, we'd like to remind you that you can still submit your entries to our new art challenge: 👉🏼 https://lnkd.in/eqHG4C3P tHAEnk you for your support! 💚🙏

Summer break☀ is coming and many of us can't wait to set off on a dream vacation!✈⛵ Below👇🏻 you will find a link to our article about traveling with HAE, full of practical tips on appropriate storage of medication, travel insurance or the HAEi's ‘Emergency card'. To make sure your trip goes smoothly, read the relevant section in our online Infocenter and download the pdf leaflet. Infocenter: https://lnkd.in/dPXYKRJ Leaflet: https://lnkd.in/exxTnDu6 Wish you safe travels! #hae #summer2024 #raredisease #nevergiveup

There is ONE WEEK LEFT to send your messages and wishes for HAE Junior's fifth anniversary! We welcome your contributions until June 20📆. They will be published as a part of our online campaign at the end of 2024. Please, find the online form📋 to submit here: https://rb.gy/rtbqym Thank you for your contribution!🙏

Do you live with a rare disease and are you interested in access to healthcare abroad?✈ Visit our Infocenter sectionℹ on the website and download the ČAVO brochure📄 to learn more about the conditions for Czech patients to access healthcare in another EU country. Follow the link👇🏻 (in Czech only) to find out more: https://lnkd.in/esgkJses

We wish all children and HAE juniors a wonderful Children's Day full of sun and joy! 🥳👨👩👦 We also remind you that until 20th June you can send us your messages and wishes to be considered for publication as part of the digital campaign to mark the 5th anniversary of HAE Junior patient organization.. Submission form: https://lnkd.in/eBcpzXrU Thank you for your participation 🙏