22q ex Yu

12/08/2026

31/07/2026

Sačuvajte datum! 📅

Pozivamo vas da nam se pridružite na Regionalnoj konferenciji o retkim bolestima – Caring for Rare 2026, koja će se održati 3. i 4. septembra 2026. godine.

𝗘𝗺𝗽𝗼𝘄𝗲𝗿𝗶𝗻𝗴 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝗶𝗲𝘀
𝘚𝘶𝘱𝘱𝘰𝘳𝘵𝘪𝘯𝘨 𝘗𝘦𝘰𝘱𝘭𝘦. 𝘚𝘵𝘳𝘦𝘯𝘨𝘵𝘩𝘦𝘯𝘪𝘯𝘨 𝘖𝘳𝘨𝘢𝘯𝘪𝘴𝘢𝘵𝘪𝘰𝘯𝘴. 𝘚𝘩𝘢𝘱𝘪𝘯𝘨 𝘵𝘩𝘦 𝘍𝘶𝘵𝘶𝘳𝘦.

Tokom dva dana okupićemo zdravstvene radnike, predstavnike udruženja pacijenata, istraživače, donosioce odluka i međunarodne stručnjake kako bismo zajedno razmenili znanja, pokrenuli važne razgovore i dodatno osnažili zajednicu osoba koje žive sa retkim bolestima.

💜 U programu vas očekuju:

▪️ Mentalno zdravlje i održivo liderstvo u organizacijama za retke bolesti
▪️ NORBS Policy Forum 2026
▪️ Sesije posvećene epidermolizi bulozi, plućnoj hipertenziji i X-vezanoj hipofosfatemiji
▪️ Izazovi u dijagnostikovanju nedijagnostikovanih retkih bolesti
▪️ Veštačka inteligencija i digitalni alati u službi zajednice osoba sa retkim bolestima
▪️ Interaktivne radionice i prilike za umrežavanje

Ovogodišnjim programom i razmenom podsećamo da zajedno možemo da gradimo budućnost u kojoj svaka osoba koja živi sa retkom bolešću ima bolji pristup dijagnostici, lečenju, podršci i informacijama.

📍 3-4. septembar 2026. | Hotel Mona Plaza, Beograd
🔗 Prijava: https://norbs.civicatalyst.org/caring-for-rare-2026

25/07/2026

Sleep that never quite restores. Assessments that raise more questions than they answer. A daily load that looks manageable from the outside and feels anything but. Living with 22q is full of these. The things that aren't dramatic enough to name as a crisis but that wear everyone down over time, child and parent alike.

Sleep affects mood, learning, and behaviour in ways that compound quickly when it's disrupted. Understanding what an assessment actually measures changes how you advocate for your child. Knowing what daily stress looks like in adults with 22q helps families support independence without letting go prematurely.

None of this is small. It just gets treated that way.

We've brought together everything we offer on everyday challenges and wellbeing into one place, practical resources across all ages and stages, including resources specifically for families supporting adults with 22q.

→ Link in comments

24/07/2026

Da li imaš između 18 i 30 godina i živiš sa retkom bolešću? Tvoje iskustvo može doprineti stvaranju boljeg sistema zdravstvene zaštite za mlade.

Hrvatski savez za retke bolesti sprovodi istraživanje o tranziciji zdravstvene zaštite – prelasku iz pedijatrijske u zdravstvenu zaštitu za odrasle.

Ovaj prelazak često donosi brojne izazove, a upravo tvoje iskustvo može pomoći u kreiranju smernica i unapređenju programa podrške za mlade osobe sa retkim bolestima i njihove porodice.

📝 Šta treba da znaš?
• Popunjavanje upitnika traje oko 10 minuta.
• Učešće je potpuno dobrovoljno i anonimno – sistem ne prikuplja IP adrese, a rezultati će biti prikazani isključivo zbirno.

📢 Učestvuj i pomozi da zajedno unapredimo sistem zdravstvene zaštite za osobe sa retkim bolestima i popuni upitnik putem linka: https://forms.gle/1vjfSmmDRHQDwk8EA

Istraživanje se sprovodi u okviru projekta „Seamless Transition: Support Models and Policies for Rare Diseases“, koji je deo programa AstraZeneca Young Health, a realizuje se u Hrvatskoj, Srbiji i Severnoj Makedoniji.

19/07/2026

📣 Join us for on November 22! 🧬❤️

The countdown is on! On November 22, let's come together to raise awareness of 22q11 syndrome across Europe.

One of the highlights of is lighting up iconic buildings in red across Europe to shine a light on 22q11 syndrome and raise awareness 🏛️🔴

We're inviting associations across Europe to join the movement! Here's how you can take part:

1️⃣ Invite building managers and municipalities in your cities/countries to light up their buildings in red.

2️⃣ For those that cannot participate by lighting up their building, encourage them to share the initiative on their social media and websites. Ideally, prepare a communication kit in your national language, including text and visuals for social media, and invite them to share this information on the day of the event.

3️⃣ Mobilize local communities, families, medical staff, volunteers, and members of your association to wear red on November 22nd and post a photo on their networks with the hashtag .

🙋 Everyone can get involved!

Planning another activity for ? Let us know! We'd love to share it on our Facebook and Instragram page!

17/07/2026

"22q ex Yu" patient organization at 14th Biennial 22q11.2 International Conference, Crete

16/07/2026

Experts from IMGGE Belgrade at 14th Biennial 22q11.2 International Conference, Crete