RARE Humans: Turning Hope Into Action. Please watch and share this important documentary that chronicles 8 rare disease families as they search for better treatments and cures.

THIS. The more I work with & learn from the #raredisease community,the more in awe of it I am, and the more in ❤️ with it I fall. Rare. Inspiring. Relentless. Hopeful. Cure Blau Sydrome Foundation CureSPG50 Parent Project Muscular Dystrophy (PPMD) CRMO Foundation Cure Sanfilippo Fdn CSNK2A1 Foundation Mila's Miracle KIF1A.ORG

#RareDiseaseDay

CRMO Families: Please fill out this survey.

We are hiring! idealist.org/en/nonprofit-j…

Grateful to be part of this inspiring community. ❤️

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

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

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

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!

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 docs.google.com/document/d/1nh…

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

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

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

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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

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. docs.google.com/document/d/1nh…

Last week to complete our survey about #COVID19 in children with rheumatic diseases. Join more than 700 caregivers globally who have participated! 👉 rheum-covid.org/pediatric-surv… #rheumatology Arthritis Foundation Lupus Foundation of America Autoinflammatory All CRMO Foundation Sjögren's Foundation Jóvenes ConArtritis

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! duke.qualtrics.com/jfe/form/SV_0q…

We need CRMO patients' their caregivers' help to establish critically-important Outcome Measures for use in Clinical Trials docs.google.com/document/d/158…… #CRMO #OMERACT