Rubinstein-Taybi Syndrome

Connections

RTS Association’s Around the World

Argentina RTS Association

Brazil RTS Association

Canada RTS Association

France RTS Association

German RTS Association

Netherlands RTS Association

Spanish Website

They also have a page on Facebook: SINDROME RUBINSTEIN TAYBI EN ESPAÑA and a Google group: Síndrome Rubinstein-Taybi

UK RTS Association

United States RTS Association

The Janet Estes RTS List

An e-mailing list allows everyone on the subscriber list to share e-mail messages automatically. When a message is sent to the RTS E-Mailing List, all subscribers receive a copy. Responses can be made privately or to the group. Basically, it’s a group discussion via e-mail. There are no fees to subscribe.

Please contact Janet Estes, RTS List Owner/Administrator at janetestes@telus.net

Lorrie Baxter started the United States Parents Group and has been helping people all over the world. 

Rubinstein-Taybi Parent Group
Garry and Lorrie Baxter
24081 G Lane
Cedar, KS 67628

Direct Contact 1-888-447-2989

Facebook

Do a search for Rubinstein-Taybi Syndrome on Facebook and you will find an organization page, Christmas email list and more… 

Facebook has pages from all over the world and also gives you the opportunity to connect personally with people from all over the world involved with the RTS community.

Blogs

Many people now have blogs.  Some of them are listed on Our Pages. If you have one that is not listed please add it to the comments section on the page!

Google Groups

Another great place to search for groups!

4 Responses to Connections

  • Our son, Johnny, RTS 19 years old, is having outpatient surgery to remove all four wisdom teeth on March 22, 2013.
    He handles anesthesia and surgery well, but it is extremely difficult to find a vein for IV or drawing blood. Dehydration makes the issue worst. Based on prior surgeries, doctors have found it works best to slightly sedated before placing the IV and to use the smallest needle possible.
    Can you offer any case examples, insights, or resources that might help this procedure be less traumatic?
    Any information you can provide for post surgery pain management will also be most helpful.
    The dentist will not sedate prior to placing IV. He said it should all be better after a week…endure.
    Thank you for any advice!
    Toni Russ
    Email: truss316@gmail.com

    • my brother is54 years old and still today will clench his face and squeeze his eyes tightly shut when getting blood drawn. I never thought it could be excessively painful until I read your post. you can imagine I fell terrible beause the plobatomist techs usually smile and laugh away his”cute response”.

  • Is this website still active? Nothing has been posted in the current year 2015. I tried emailing Janet to be put on the emailing list and the email address was rejected.

    My 3 year old son was just diagnosed with RTS and I would like to connect with families, especially anyone who’s child has the EP300 gene.

    Deanna

  • My son is 41yrs old and refuses to go to the Doctor or Dental Office. He will not get out of the car if I take him for an appointment. Due to not allowing labs to be done. We have lost our 3rd Physician since he want allow any treatment. He has a mouth full of bad teeth and needs extractions. My question is has anyone with RTS had dentures and if so how is that working out?

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