NMO France presents a selection of reference websites and resources from France and abroad.
These resources come from different organizations and are related to rare diseases, or more specifically to rare inflammatory diseases of the brain and spinal cord, such as NMO spectrum disorder (NMOSD), MOG antibody-associated disease (MOGAD), transverse myelitis, acute disseminated encephalomyelitis (ADEM), and optic neuritis (ON). This list of resources is subject to change.
BRAIN-TEAM is the French Rare Disease Network for Rare Central Nervous System Diseases.
BRAIN-TEAM covers rare diseases of the central nervous system, whether motor or cognitive, familial or sporadic, with varying degrees of impact on patients. These diseases can occur at any stage of life, both in adults (including the elderly) or children (babies, young children, adolescents).
MIRCEM is the French National Reference Center for Rare Inflammatory Diseases of the Brain and Spinal Cord. It compiles data on various neurological inflammatory diseases.
Its aim is also to inform the public and healthcare professionals about these diseases, and to identify, recommend and propose available therapies.
MIRCEM is part of BRAIN TEAM and ERN RITA (European Reference Network for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases).
A Foundation supporting research on multiple sclerosis (MS).
It devotes part of its activities to neuromyelitis optica spectrum disease (NMOSD).
Created in 2000, the Alliance Maladies Rares was born out of the common desire of a handful of rare disease associations who were aware of their isolation. Each of them represented too few patients, but by uniting the voices of 240 patient associations of various rare diseases (including those without a diagnosis), the Alliance contributes to a better quality of life for all those affected. It advocates for an equitable society where everyone’s civic participation and our collective alliance promote solidarity, and sharing of knowledge.
As the representative body for the 3 million French people affected by rare diseases, Alliance Maladies Rares raises awareness and engages with the public, healthcare professionals, and institutions. Its expertise has a direct impact on public health policies and promotes the advancement of clinical and scientific research.
The Foundation for Rare Diseases is a scientific cooperation foundation created in 2012 to accelerate research in the field of rare diseases. It was created by 5 founding members, including Alliance Maladies Rares (representing the patients), researchers and doctors. It funds projects of scientific excellence, and encourages the sharing and dissemination of knowledge in the field of rare diseases.
Maladies Rares Info Services is a health information service in France specializing in rare diseases. Since the end of 2001, it has been responding to requests from patients, their families and healthcare professionals on a daily basis.
Podcast channel dedicated to rare diseases. Scientific content on rare diseases, delivered in a clear, easy-to-listen format.
The aim of a national diagnosis and care protocol (PNDS) is to optimize and harmonize the care of patients affected by a rare disease, in conjunction with the reference center and/or expert centers throughout France. NMO France participated in the development of the PNDS on neuromyelitis optica spectrum disorders (NMOSD), or in French, «Les maladies du spectre de la neuromyélite optique (NMOSD)».
The aim of a national diagnosis and care protocol (PNDS) is to optimize and harmonize the care of patients affected by a rare disease, in conjunction with the reference center and/or expert centers throughout France. NMO France participated in the development of the PNDS on MOG-associated antibody disease (MOGAD), or in French, «Le spectre des maladies à anticorps anti-MOG (MOGAD)».
Orphanet is the portal for rare diseases and orphan drugs. Created in France in 1997 by the French National Institute for Health and Medical Research (INSERM), it has since expanded to include 40 countries. Orphanet’s aim is to provide equal access to knowledge on rare diseases for all stakeholders, in order to facilitate and improve patient diagnosis, care and treatment.
This is the 3rd National Plan for Rare Diseases (PNMR) presented by the Ministry of Solidarity and Health and the Ministry for Higher Education, Research and Innovation.
The first two plans contributed to major advances, notably with the establishment of competence centers, reference centers and rare disease networks to provide better access to care and expertise for all. These structures enabled the concentration of clinical and biological data essential for treatment, prevention and research, and helped establish closer ties between patient associations and healthcare professionals. Nevertheless, diagnostic delays and undiagnosed diseases remain frequent. This 3rd plan sets out 55 measures, grouped into 11 areas, to pursue the efforts already underway, notably by reducing diagnostic delays, developing the research potential, reinforcing the role of rare disease networks in coordinating the actions of the many players involved, and ensuring greater clarity of the care pathway for patients and their families.
ARIBa brings together professionals involved in the rehabilitation and training of the visually impaired, while respecting each individual’s role and autonomy. ARIBa also develops and promotes methods and techniques for the rehabilitation of the visually impaired and maintains a directory of ARIBa members: professionals specializing in low vision.
NMO France spotlights: Therapeutic news for NMOSD – June 2023
EURORDIS is a patient-driven, non-governmental alliance of patient organizations.
It federates 1000 rare disease patient organizations covering more than 4000 rare diseases in 74 countries. Its aim is to unify, extend and strengthen the rare disease movement worldwide.
Summary of new research by Dr. Ruth Geraldes and Professor Carla Tortorella.
An informative website with many resources (including a video) for people affected by NMOSD in Europe.
MS International Federation is a worldwide network of multiple sclerosis (MS) organizations.
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