NMO France is the first and only patient organization to date to bring together, in France and the French-speaking world, people affected by neuromyelitis optica (NMO) spectrum disorder (NMOSD), as well as other rare inflammatory diseases of the brain and spinal cord such as myelin oligodendrocyte glycoprotein (MOG) antibody-associated disease (MOGAD), transverse myelitis, acute disseminated encephalomyelitis (ADEM), and optic neuritis (ON). These rare inflammatory diseases of the central nervous system are distinct from multiple sclerosis (MS). For some of these diseases, this distinction has only recently been made, thanks to technological advances enabling a specific diagnosis.
With a unique and uncommon approach, we aim to shine light on the patients’ journey, without hiding the difficulties experienced, as each person diagnosed with one of these diseases is different.
It is essential to capitalize on the rapidly growing community to find appropriate solutions, and thus move towards a better quality of life for everyone.
Our aim is to accompany and support all of those concerned, starting of course with the patients, but also their family members and caregivers, by placing them back at the heart of the health system.
In order to achieve this, NMO France is the key contact point for healthcare professionals and their reference and competence centers in France and the French National Authority for Health (HAS). NMO France also forges partnerships, in France and abroad, with foundations, patient organizations and companies working to provide therapies and management solutions for these diseases, which affect several thousand people in France.
The origins of NMO France
At the age of 43, after a diagnostic odyssey lasting 4 years (including a misdiagnosis), Souad Mazari was plunged into darkness in a matter of days. She experienced great isolation following the announcement of her diagnosis. Affected by a rare disease, she believed that she was alone, as there was no patient organization that brought together patients with neuromyelitis optica spectrum disorder (NMOSD). After discovering that her disease affected many other people, Souad felt the need to connect with others and to federate a caring community that would share its knowledge and enable all patients, their loved ones and caregivers to feel supported, heard and listened to, thanks to a shared experience of being “rare but together“!
It was equally essential for Souad Mazari to provide information to patients, so that they would not experience the same chaotic journey that she had. While taking an active role in her own health and the management of her disease, Souad also wished to contribute to awareness raising and research efforts to battle NMOSD and other rare inflammatory diseases of the brain and spinal cord, such as MOG antibody-associated disease (MOGAD), transverse myelitis, acute disseminated encephalomyelitis (ADEM), and optic neuritis (ON). Her disability gave her the determination to take action in order to drive change, talk about her experience and raise awareness about these rare diseases.
It was in Lyon, the city of French neurologist Eugène Devic who first described NMO, that she founded NMO France. Lyon also hosts one of the national reference centers for rare inflammatory diseases of the brain and spinal cord (MIRCEM), where Souad Mazari is treated, and is equally home to the French reference laboratory for anti-MOG antibody research. Over the course of this journey, the association’s roots in Lyon have spread out, bringing together all stakeholders in the field in order to have both a national and an international presence.
By creating NMO France, a patient organization made for the patients, Souad Mazari has sought to shed light on a disease that plunged her into darkness. It is the story of a past marked by diagnostic wandering and solitude in the early stages of her disease; of a present marked by the creation of a supportive network that mobilizes the resources of those directly or indirectly affected by these rare diseases and which awakens their resilience; and of a future where NMO France progressively grows its influence and reach.
NMO France would like to invite experts in NMOSD, MOGAD and other rare inflammatory diseases of the central nervous system to join our International Scientific Advisory Board.
Interested in helping NMO France accomplish its missions? Contact us today!
Elizabeth Brammer is responsible for International Patient Relations at NMO France and will be happy to reply to any international enquiries.
Elizabeth is a MOGAD patient that has been living with the disease since 1993. She went through many misdiagnoses before landing on MOGAD in 2020. She has worked in the NMOSD/MOGAD advocacy space since 2007. She has an undergraduate degree from Baylor University in International Studies/Policy along with a minor in Arabic, and a Juris Doctor from Oklahoma City University.
“France is my second home, and I have a deep love of the culture and people. I hope to build bridges between the international patient communities.”
Our values of integrity and transparency, sharing, mutual aid, compassion, and support guide us in order to achieve the following goals:
Connect patients together and place them at the heart of the healthcare system
Raise awareness and increase recognition of neuromyelitis optica spectrum disorder (NMOSD) and other rare inflammatory diseases of the brain and spinal cord, such as MOG antibody-associated disease (MOGAD), transverse myelitis, acute disseminated encephalomyelitis (ADEM), and optic neuritis (ON), to bring these rare and poorly understood diseases out of the shadows
Promote and support research, scientific discovery and therapeutic innovation to help build a better future for patients
Develop useful initiatives to combat isolation among patients and their families, advocating for them both individually and collectively
Support all initiatives designed to improve the autonomy and quality of life of patients and their families
Our community
Our community is made up of patients affected by NMOSD, MOGAD, transverse myelitis, ADEM, and ON, or other rare inflammatory diseases of the brain and spinal cord.
You can join this French-speaking community to receive support and/or share your experience with others like you:
Today, more than ever, it is essential to do everything we can to take action and increase our communication efforts to raise awareness of these rare diseases that can affect us all. That is why your contribution is so valuable.
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