CRMO Foundation

Supporting CRMO patients by furthering the efforts of life-changing research, increasing access to resources and education and promoting awareness. #RareAsOne

[CRMO Foundation @CRMOFoundation]

We need CRMO patients' their caregivers' help to establish critically-important Outcome Measures for use in Clinical Trials https://t.co/q1f92Ck7GZ… #CRMO #OMERACT

[CRMO Foundation @CRMOFoundation]

Please help us by completing the 5 minute survey below. Participation is voluntary and no personal information will be collected that could be used to identify you. Thank you!
https://t.co/cB3hc1eyoc

[Jonathan Hausmann MD @hausmannMD]

Last week to complete our survey about #COVID19 in children with rheumatic diseases.

Join more than 700 caregivers globally who have participated!

👉 https://t.co/eT3FbIPugT

#rheumatology @ArthritisFdn @LupusOrg @AAlliance_SAID @CRMOFoundation @SjogrensOrg @ArtritisJovenes

[CRMO Foundation @CRMOFoundation]

@MrMurphyLVPS @ScottishSPCA @gaincharity What a wonderful assignment! Honored to be chosen as one of the charities discussed to raise awareness about CRMO. ♥️

[CRMO Foundation @CRMOFoundation]

Presentation recordings are up and posted via hyperlinks in the Agenda document - a couple of the patient presentations are not quite finished yet. Let us know if you have any issues accessing them. https://t.co/pTOUbq4eM1

[CRMO Foundation @CRMOFoundation]

Thanks to everyone who participated in person and online yesterday! Recorded presentations will be posted online soon. We learned so much from hosting this first meeting.
So thankful for everyone who made this such a tremendous event

[CRMO Foundation @CRMOFoundation]

❤️❤️❤️

[Dr Rheum @rheumdoctor]

The good news is...
@CRMOFoundation CSO @alex_theos shares his experience with #CRMO #CRMOMeeting2022 #ACR22 #CNO #RheumTwitter

[Dr Rheum @rheumdoctor]

Hearing about the #patient experience with #CRMO
#CRMOMeeting2022 #ACR22 #RheumTwitter #CNO

[Dr Rheum @rheumdoctor]

#CRMOWarrior #CRMOMeeting2022 #ACR22 #CRMO #CNO #RheumTwitter

[CRMO Foundation @CRMOFoundation]

Can’t believe what an amazing day it was yesterday! ❤️

[Dr Rheum @rheumdoctor]

Good morning from the @CRMOFoundation patient and family meeting!
#CRMO #ACR22 #RheumTwitter #CRMOMeeting2022

[CRMO Foundation @CRMOFoundation]

@rheumdoctor Thank you so much for participating! Amazing photos! ❤️

[CRMO Foundation @CRMOFoundation]

The CRMO Patient/Family Meeting on Thursday November 10th will be at the Kimpton Hotel Palomar at 117 S. 17th Street in Philadelphia, PA. Schedule available at https://t.co/pTOUbq4MBz

[CRMO Foundation @CRMOFoundation]

The CRMO Foundation invites members of our community to Philadelphia, PA for a patient-focused meeting on November 10th. With the goal of connecting and empowering patients, their caregivers, scientists and the entire community, we hope you will join the collaborative network!

[CRMO Foundation @CRMOFoundation]

Inaugural CNO Conference was a success! Thankful for the @EATC4Children for including us in this wonderful event!

[EATC for Children @EATC4Children]

Thank you to everyone that attended the CNO Conference over the last two days - both in person and online, we are so pleased to be able to bring this wonderful group of clinicians, scientists, patients and families together to learn and collaborate @CRMOFoundation @Fight_CRMO

[CRMO Foundation @CRMOFoundation]

The patient’s perspective is critical to understand and propel rare disease research forward. Chris is 13. This is his story.

[CRMO Foundation @CRMOFoundation]

First International CRMO/CNO Research Conference is finally happening!!

[CRMO Foundation @CRMOFoundation]

Grateful to be part of this inspiring community. ❤️

[biohub @biohub]

"At the #RareAsOne Network virtual community meeting, we are bringing together a ‘network of networks’ to strengthen relationships within the rare disease community and support the sharing of learnings.” -@heidibp, #RareAsOne Program Manager

[CRMO Foundation @CRMOFoundation]

We are hiring! https://t.co/Y2NNKimS24

[CRMO Foundation @CRMOFoundation]

CRMO Families: Please fill out this survey.

[EATC for Children @EATC4Children]

Calling patients and parents:
We want to understand what you see as the TOP priorities for research into CNO/CRMO. Your priorities will then be used to set the agenda for our 2022 conference. Complete the survey here:
https://t.co/5Lt4BeqjT9

[CRMO Foundation @CRMOFoundation]

@PatientWorthy @PatientWorthy, this study is for infectious osteomyelitis which is different than CRMO, which is an innate immune response with no known trigger. Infectious osteomyelitis must be ruled out before being diagnosed with CRMO. They are different diseases.