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.
CRMO patient/family meeting 2022
The CRMO Foundation is hosting a patient/family meeting in Philadelphia which will include a full day (Thursday November 10th) of presentations and round table discussions involving all participants on topics such as the patient experience, diagnosis and disease monitoring, the clinical care of patients and the molecular mechanisms of disease.
Presenters will share our current understanding and highlight some of the gaps in our knowledge. Our patient/family participants will bring their lived experience with the disease to these discussions so that we can identify the questions that need to be most urgently addressed for CRMO patients.
To learn more about the agenda and keynote speakers, click the "Agenda" button below.
To register your interest in attending this meeting, scan the QR code or use the "Register" link below.
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.
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.
The CRMO Foundation is an official NORD Member Organization and part of the Global Genes Rare Foundation Alliance.
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
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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