About the ROS1ders


This website is run by a group of patients and family members dealing with ROS1 positive (ROS1+) cancer, also called ROS1-rearranged or ROS1 fusion cancer.  The group currently has over 150 patients from over 19 countries–not bad for a rare cancer!  We call ourselves “ROS1ders.”

Location of ROS1ders (Sep 2016)

We created this place to collect and share information living with, treating, and researching ROS1+ cancer.  We also share blogs written by ROS1+ patients and carers in several countries.  You can read some ROS1+ patient stories here.

Learn about joining one of our ongoing research studies into ROS1+ cancer and find links to published results.

If you are interested in partnering with the ROS1ders, or have a question not answered on our website, please send us a message using our Contact Us page so we can connect.

You can also contact us using the methods below:

The public Facebook group
facebook.com/ROS1CancerResearchForum/
A space to share and discuss ROS1 news and research

The private Facebook group
For patients and caregivers only. To join:
1) Fill out this form: https://goo.gl/forms/o4ZU9zFQFyXKX4rm2
2) Go to https://facebook.com/groups/ROS1cancer/ and request to join the group.
If you have any questions about the Facebook group, send a private FB message to administrators Tori Tomalia, Janet Freeman-Daily, or Lisa Goldman.

Bonnie J. Addario Lung Cancer Foundation
lungcancerfoundation.org/ros1
Supports ROS1 patients and carers, and enables ROS1 research through partnerships and funding.

Smart Patients has a ROS1 Cancer community.  Relevant discussions are tagged “ROS1” to make them easy to find.  Janet Freeman-Daily moderates it.

Follow the ROS1ders on Twitter at @ros1cancer.

ROS1der Fliers

You can download and print fliers to share information about this website, the ROS1 patient group, and our patient-driven research below:

Download the English ROS1ders flyer here: ROS1ders-english
Download the German ROS1ders flyer here: ROS1ders-german

We are in the process of translating the flier into other languages.

Last updated 24-May-2017

4 thoughts on “About the ROS1ders

  1. Hi, I’m from Belgium, my husband (44 years old, never smoked a cigaret or anything else, ran marathons,…) was diagnosed with lungcancer in october 2014, tested ALK-negative, had 9 ‘regular’ chemo’s (1x cisplatin, 3x carboplatin, 2x mono-alimta, 3x taxotere) which all helped for some weeks but then failed…
    In june 2015 he took a ROS-test and came out positive ! All of a sudden we had a future again with our kids (now 10 and 13 years old), Xalkori-treatment is still succesful, but also has side-effects, mostly in the intestines. If anyone can relate to this and has any leads to ease the pain and discomfort, we would be very greatful !

    Like

    1. I’m so glad you found this site! Please join our Facebook group, where you can meet with other ROS1ers from around the world. We have 50 members so far!
      Tori Tomalia

      Like

  2. 私はROS1患者です。一年まえから日本でザーコリー

    の治験を受けています。

    日本ではザーコリーの後の薬(分子標的薬)は、まだありません

    他の国ではいかがでしょうか?

    Like

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