Our Mission
The mission of the CRMO Foundation is to support and improve the health and well-being of Chronic Recurrent Multifocal Osteomyelitis (CRMO) patients and their families by furthering the efforts of life-changing research, increasing access to resources and education and promoting awareness of the disease.
Founded by a group of engaged parents determined to promote awareness and support vital CRMO research.
Maintaining a platform to share accurate and updated information about the disease and research.
Supporting strong scientific research leading to better treatments and care for patients and families.
Linking families around the globe to build connections and support systems within the community.
Engaging communities globally to increase awareness and fundraising to support vital research.
OMERACT
Help establish critically important outcome measures for use in clinical trials for CRMO patients
What is the OMERACT project and why is it important for CRMO patients and families?
This is a CARRA CRMO Workgroup-led initiative. Dr. Melissa Oliver is directing our efforts with Drs. Philip Mease, Dan Zhao, Christian Hedrich and Jonathan Akikusa co-chairing the workgroup within OMERACT, along with methodologist Bev Shea.
In brief, OMERACT is a non-profit organization “committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.”
In order to properly conduct drug efficacy trials in CRMO patients, we must have well-defined and comprehensive “outcome measures” for CRMO. The measures will be used to gather evidence to determine whether specific drugs work effectively for patients with CRMO.
What stage is the project at right now, and how can I get involved?
The group has identified (through literature review, focus groups, etc. OMERACT diagram left), and narrowed down a list of potential “domains” to be included - you can think of a “domain” as a specific aspect of the disease or patient experience with the disease, e.g. pain.
We are now ready to move to the next step, which is where we need your help. We need a large number of our community members (patients/parents/caregivers) to vote on their top domains - to determine which of these domains are recognized by those impacted by this disease as more important than others. Clinicians who treat CRMO patients will also vote, but it is tremendously important that we include the patient's perspective.
After this voting and ranking process is completed, the top domains will be selected into the final core set. The final part of the process is for the group to determine the most appropriate “instruments”, or the way we are going to measure changes for each domain. These instruments will then be used in rigorous clinical trials for different drugs/interventions for improving the health outcomes and quality of life of CRMO patients.
Please complete this form (access via link or QR code) to be added to the participant list for the OMERACT CNO/SAPHO Core Domain Set Delphi surveys. You will then receive instructions on how to participate via email once the Delphi survey is live.
For more information about OMERACT and the group’s work, click here.
The CRMO Foundation was selected to be part of the ChanZuckerberg Intitiative's Rare as One Network — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.
We will work with the Rare as One Project for the next 24 months, learning and benefiting from CZI mentors and other Rare as One rare disease nonprofits.
We wrote the application for this grant last summer and are so pleased that we were selected out of a competitive group.
Our goal with the help of CZI is to create a collaborative research network to accelerate therapies for all CRMO patients. Working in partnership with the rare disease community, the Rare As One Project will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another. The Chan Zuckerberg Initiative’s Rare As One Project aims to strengthen the efforts of patient-led groups. It will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts.
This is huge and we could not be more pleased to be a part of this endeavor.
Please visit www.RareAsOne.org for more information.
The official CZI Press Release
What is CRMO?
Chronic Recurrent Multifocal Osteomyelitis, also known as Chronic Non-bacterial Osteomyelitis (CNO), is a rare, autoinflammatory bone disease of unknown etiology. It involves inflammation of one or more bones and can be chronic. In a properly functioning system, inflammation is a normal process and is the way the immune system protects us from infections and germs. However, in CRMO, there is no infection. The immune system wrongly attacks normal bone and causes inflammation.
Partners
The CRMO Foundation is an official NORD Member Organization and part of the Global Genes Rare Foundation Alliance.
Global Genes
The Global Genes Rare Foundation Alliance is a community of rare disease foundations who have committed to working with Global Genes | RARE Project and other nonprofit foundations to collaborate to create a stronger collective voice in the rare disease community. To learn more, visit their website at www.globalgenes.org
NORD
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. To learn more about NORD and their programs, please visit their website at www.rarediseases.org.
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CRMO Foundation
2827 Sunset View Drive
Fort Collins, CO 80528
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