Alstrom Syndrome International

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Alstrom Syndrome International

To provide support, information, & coordination
worldwide in order to treat and work to cure Alstrom.

Our mission is to provide support, information, and coordination
world-wide to families and professionals in order
to treat and cure Alström Syndrome. Alström Syndrome International is a 501 (c) (3) registered charity. ASI develops, maintains, and manages the largest Alström Syndrome clinical database in existence, conducts international family conferences, and consults with researchers and physic

ians at hospitals and institutes for an updated medical opinion. Alström Syndrome is a rare genetic disease that affects many parts of the body. Alström Syndrome can affect every organ and cell in the body. Alstrom symptoms can include problems with vision, hearing, stature, heart, liver, kidneys, and often Type 2 diabetes. For more information on Alström Syndrome please visit https://www.alstrom.org/what-is-alstrom-syndrome/

For more information about Alström Syndrome International or Alström Syndrome please visit the website at: https://www.alstrom.org/about-asi/

04/20/2026

Last Round of "Where is our ASI Conference Planning Committee?" 🕵️

This one is a little wild…
🐾 Animals from around the world
🌿 Outdoor adventure
📸 Lots of photo-worthy moments

Can you guess where we’re going? 👇👀

04/20/2026

Let the games begin! 🎉

We’re heading to Alley Cats! 🎳🎮 ⛳️ Bowling, games, and lots of laughs—it’s going to be a blast for our conference kiddos! 💙

👀 Stay tuned for another round coming soon!! In the meantime, go get registered and hotels booked to join us for all the conference fun!!

📅 May 21, 2026 at 6pm to May 25, 2026 at 10am
📍 Fort Worth, TX
💙 Registration: https://tinyurl.com/ASIConference11
🤠 Hotel: https://tinyurl.com/ASIhotel

04/16/2026

The ASI Data Collection Program is now LIVE!!! 🎉 🧬 👏 If you missed last night's informational webinar, you can now watch the full recording on our website!

Learn more about our partnership with RARE-X, a program of Global Genes, and how this important initiative will help accelerate research and future treatments for Alström Syndrome.

Find more details about the program and sign up to participate today!

👉 www.alstrom.org/rarex-asi

Together, we can make a lasting impact—one step closer to better treatments and a cure. 💪 💙

04/15/2026

TONIGHT’S the night!! 🎉 Join us for the Webinar tonight to learn more about the Alström Syndrome International’s partnership with RARE-X, a program of Global Genes, to build a Data Collection Program for Alström Syndrome families. 🧬

When Alström families participate in the Alström Syndrome Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies. 👏

⏰ TONIGHT, Wednesday, April 15th at 5PM EST

Sign up ASAP!
👉 https://forms.gle/nszoA5xg1GLUPRzd7

Tonight’s webinar will cover this new program and what it will do for you. The webinar will be recorded, but we hope you can join us live to have your questions answered.

04/14/2026

There's still time to make a meaningful impact and become a sponsor for our 11th Alström Syndrome International Family Conference & Scientific Symposium this May in Fort Worth, Texas!!! 🤝

Your sponsorship helps us bring families, researchers, and clinicians together to advance understanding, share hope, and strengthen our rare disease community. 💙

✨ Interested in sponsoring? Send us a message OR email Rocky.Tucker@alstrom.org for more information on how you can make a lasting impact and help create an unforgettable conference experience.

04/13/2026

Round 3 of "Where is our Conference Planning Committee?" 🕵️

Think classic fun with a twist…
🎳 Friendly competition
🎮 Games, putt putt golf, and more...
🍕 The perfect hangout spot - will we see you there?

Where are we taking the crew? 👀👇 Share your guesses in the comments below!!

04/13/2026

You guessed it!!! 🎉 Get ready to m-o-v-e!

We’re taking conference kiddos to enjoy Ninja Kidz! 🥷💥 Get ready for climbing, jumping, and tons of high-energy fun. This one is sure to be a favorite! 🤩

Get ready for another sneak peek coming later today!!!

04/10/2026

Happy National Siblings Day!! 💙

Today we celebrate the incredible siblings who walk alongside their brothers and sisters with Alström Syndrome. 💪

Your love, patience, strength, and support do not go unnoticed—you are an important part of this community, and we are so grateful for you.

We hope you’re joining us for the ASI Family Conference in May! We can’t wait to see and celebrate you, too!! 👏

✨ Tag a sibling who deserves some extra love today!

04/09/2026

Round 2 of "Where is our Conference Planning Committee?" 🕵️‍♂️

This stop is all about energy and action…
💥 Climbing, jumping, and obstacle courses
🥷 Burn off ALL the energy
😄 Big fun guaranteed

Where do you think we’re headed next? 👇 Let us know in the comments below!!

04/08/2026

Hey Friends!! April 29th is the LAST DAY to get registered and hotel booked to join us for the ASI Family Conference & Scientific Symposium in Fort Worth! 🤠🌵 Don't delay - get those travel plans made ASAP!

We have an exciting event planned, and can’t wait to come together for an unforgettable week of community, education, and hope.

📅 May 21, 2026 at 6pm to May 25, 2026 at 10am
📍 Fort Worth, TX
💙 Registration: https://tinyurl.com/ASIConference11
🤠 Hotel: https://tinyurl.com/ASIConferenceHotel

**𝘗𝘭𝘦𝘢𝘴𝘦 𝘕𝘰𝘵𝘦: 𝘝𝘢𝘭𝘦𝘵 𝘱𝘢𝘳𝘬𝘪𝘯𝘨 𝘳𝘢𝘵𝘦𝘴 𝘯𝘰𝘵 𝘪𝘯𝘤𝘭𝘶𝘥𝘦𝘥 𝘪𝘯 𝘳𝘰𝘰𝘮 𝘱𝘳𝘪𝘤𝘦. 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺 𝘪𝘯𝘧𝘰 𝘤𝘢𝘯 𝘣𝘦 𝘧𝘰𝘶𝘯𝘥 𝘢𝘵 𝘵𝘩𝘦 𝘦𝘯𝘥 𝘰𝘧 𝘵𝘩𝘦 𝘣𝘰𝘰𝘬𝘪𝘯𝘨 𝘭𝘪𝘯𝘬.

More details and helpful travel tips can be found over on our website, too!
👉 https://www.alstrom.org/events/conference2026

04/06/2026

Alström Syndrome International is partnering with RARE-X, a program of Global Genes, to build a Data Collection Program for Alström Syndrome families. 🧬

When Alström families participate in the Alström Syndrome Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies. 👏

✏️ Please join us April 15th at 5PM EST for a webinar to learn about this new program and what it will do for you. This webinar will be recorded, but we hope you can join us live to have your questions answered.

Sign up today!
https://forms.gle/nszoA5xg1GLUPRzd7

Address

251 SW Wilshire Boulevard #124/304
Burleson, TX
76028

Website

https://www.alstrom.org/

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