22q ex Yu

21/05/2026

21/05/2026

20/05/2026

What if a simple test at birth could change the course of a child’s life? 👶

Newborn screening (NBS) plays a crucial role in identifying certain rare diseases early - often before symptoms appear. For many children, this can mean earlier treatment, delayed disease progression, and a better quality of life.

Yet across Europe, access to newborn screening remains uneven. The number of conditions screened varies significantly from one country to another, from fewer than 10 to nearly 50.

As science advances, so does the potential to screen for more conditions. But without a coordinated approach, many families risk missing out on life-changing early diagnosis.

We advocate for a more harmonised and equitable approach to newborn screening across Europe, guided by shared principles and strong collaboration. ✊

🔗 Learn more about EURORDIS' work in newborn screening: https://go.eurordis.org/newbornscreening

17/05/2026

I pored lošeg vremena, porodice obolelih od poremećaja na 22. hromozomu okupile su se u Zoo vrtu Palić ❤️🎈

10/05/2026

📣 Roll Call! 45 Locations and Counting….

Our website has been updated https://22q.org/get-involved/22q-at-the-zoo/ —check out the latest confirmed locations near you!

Get your state or country on the map…Want to host your own event? It’s easy! Gather at a zoo, park, backyard, aquarium, roller rink, bowling alley—or anywhere your community can come together. Email us at [email protected] and we’ll get your event listed.

Don’t forget to wear your official 22q at the Zoo t-shirt (while supplies last!) to help spread awareness and show your support.
Get yours here: https://22q.org/product/the-2026-official-22q-at-the-zoo-worldwide-awareness-t-shirt/

🌍 Join us and be part of this worldwide day of awareness!

Irvine, CA, Sacramento-CA, Boca Raton, FL-Melbourne, FL-Tampa Bay, FL-
Atlanta, GA-Brookfield, IL-Indianapolis, IN-Mendon, MA-St. Paul, MN-
Kansas City, MO - St. Louis, MO - Asheboro, NC - Colts Neck, NJ-Buffalo, NY-
Cincinnati, OH - Columbus, OH - Oklahoma City, OK - Philadelphia, PA -
Pittsburgh, PA - Sioux Falls, SD - Austin, TX - Dallas, TX - El Paso, TX - San Antonio, TX - Seattle, WA - Kingswood, WV

International Locations – Buenos Aires, Argentina - Gold Coast, Australia -Melbourne, Australia -Perth, Australia - Toronto, Canada - Leicestershire, England - Gavieside West Calder, England - Helsinki, Finland - Ranua, Finland - Cork, Ireland Dublin, Ireland - Valeggio sul Mincio, Italy - Nagano, Japan - Rotterdam, Netherlands - Newtownards, Northern Ireland - Subotica, Serbia

10/05/2026

To the mothers in this community.

The ones who have spent years learning a version of parenting nobody prepared them for. Who have sat in waiting rooms, fought for the right support, explained their child to people who didn't quite understand and then gone home and done it all again.

Who are holding more than one child in mind today, that is, a child with 22q, a child without, siblings who are finding their own way through a family life that asks a lot of everyone.

Who love their child completely, and still have days where the weight of it is almost too much to name.

And to the mothers who are missing a child today. Who carry them differently now, but no less.

Mother's Day can be a complicated day. The joy is real. So is the grief, the exhaustion, and the love that doesn't have an off switch.

We see you. Not just the strength, all of it.

03/05/2026

Early adulthood with 22q has a particular shape.

Stress doesn't sit in one place. It builds across the body, the mind, and the social world. The biological load that nobody can see from outside. The mental work of being misunderstood, year after year. The exhaustion of social spaces that take ten times the energy other people spend.

This stage doesn't get described well in most of the places families look for information. So we made a webinar that describes it properly.

Stress and Happiness in Early Adulthood with 22q — with Linda and Sasja.

Three parts, available from 9 May. Watch them together or separately, in whatever order works for your week. Subtitles in 12 languages.

A live Q&A follows on Saturday 17 May — a chance to bring questions and sit with other families and professionals in this conversation. You can join the Q&A whether you've watched all three parts, just one, or none yet.

Preorder now. Link in bio or comment section.

Wherever you are in the world, whatever shape this stage looks like in your family, you're welcome.

27/04/2026

2 likes. "What’s New in 22q - Podcast Episode 13 - Mitochondrial Rescue in 22q11"