April 30, 2024

La Voix de Migraineux Battles Stigma with Information and Support in France

La Voix de Migraineux was founded in September 2018 to help French-speaking people living with migraine and their loved ones. The organization was founded by four individuals living with the disease who wanted to provide reliable information and reduce the social isolation and stigma of migraine. 

The group is completely voluntary, led by an unpaid staff and volunteers. La Voix de Migraineux focuses on its work toward people living with migraine, both diagnosed and not yet diagnosed, along with families, caregivers, the general public and authorities. It has four objectives: 

  • Providing support 
  • Supplying information 
  • Raising awareness 
  • Advocating for better care, recognition of disability and better management in employment and education.

Active membership 

Membership is €5 and is open to anyone interested in migraine including those living with the disease, relatives and professionals. There are 850 members. 

La Voix de Migraineux has two types of participants: Members and Active Volunteers. Members have a declaratory voice and can give their opinion. There are also 25 Active Volunteers who contribute five to 6,000 hours of volunteer work throughout the year. Projects can include advocating on behalf of migraine as well as others such as writing, translating, editing, Web site administration, social media columnist, scientific documentation, mailings or other projects. 

Providing information and support 

La Voix de Migraineux works with professional organizations and caregivers to provide information about migraine. Its website provides reliable and verified information on migraine and is completely written, translated and laid out by volunteers. All graphics are also created by volunteers. The website is available in seven languages via Google translate. 

Members, active volunteers, any patient, caregiver or professional can contact La Voix de Migraineux for free information or support. On average, the organization responds to about 20 requests a day for information about migraine from people living with the disease, caregivers and others. It can be difficult to respond to all requests, especially patients who are in distress, but they try their best to meet every challenge. 

They also have a very dynamic social network with almost daily posts and 20,000 followers. Feedback shows that the information they are providing is helping individuals live better with migraine. People tell them they learn more in six months with the support La Voix de Migraineux than they have living with migraine for 30 years. 

Surveys provide important insight

La Voix de Migraineux has carried out numerous surveys to improve understanding and recognition of migraine. Their Our Migraine and Employment survey showed that almost 50% of migraine sufferers experience an increase in the frequency of their attacks and medication usage, during working periods. 

The recent Migraine Patient’s Care Pathway survey aimed to understand how people living with migraine felt about their care. The survey gathered responses from 683 respondents and covered several topics including:

  • Patient profiling
  • Diagnostic and therapeutic accuracy
  • Daily function and frequency of crisis
  • Preventive treatments
  • Compliance and managing adverse effects
  • The patient-caregiver relationship
  • Challenges finding healthcare professionals
  • Shared decision making

Key headlines included: 

  • Participants had a diagnostic delay of 7.5 years between the time of symptoms and diagnosis. 
  • On average,  patients consulted  2.7 healthcare professionals before receiving a diagnosis.  
  • Of the 190 patients who had not consulted a neurologist over the previous 12 months, 49 patients (33.6%) had given up because it took too long to get an appointment and 33 patients (22,6 %) had not consulted a neurologist who specialized in migraine.
  • During their lifetime survey respondents had taken an average of 5.6 different acute treatments and had tried an average of  5 different preventive treatments. 

The survey was carried out with a scientific committee and was presented at many events. This included a teleconference of the Haute Autorite de Sante (French Hhigh health authority) which  will also publish the dossier on their website. and the  Agence National de Security du médicament  (French drug safety agency).

La Voix de Migraineux  also entered some results from the survey into a  competition at the Congress organized by Société Francaise d’Etude des Migraines et Céphalées (French Society for the Study of Migraines and Headaches) and won first prize.

The survey has been instrumental in creating a movement around having migraine recognized as a public health issue. You can find more information about the surveys conducted by La Voix de Migraineux on their website (in French). 

 Annual summit advances understanding and global collaboration

La Voix de Migraineux also holds its annual Francophone Migraine Summit. Its goal is to share scientific information about migraine in French with people living with migraine, their families and caregivers. The event mobilizes the media and is supported by a press campaign that creates media visibility in France and other countries. Events are live on YouTube and then available for replay. Past events have covered:

  • 2021: What is a migraine? What are the migraine mechanisms?  New treatments? had almost 15,000 views. 
  • 2022:  Migraine in children / Migraine with Aura / Prospects for treatment had press coverage in the form of articles as far away as Jordan and Armenia.
  • 2023: Vestibular symptoms / Research / Meditation and Sleep had almost 5,000 views in the four months since its digital premier. 

Past events have featured specialists from France, Belgium, Canada and Switzerland and they hope to include many more countries including those from Africa in the future. 

Advocating for improved treatment access and quality of life 

La Voix de Migraineux also advocates on behalf of people living with migraine, focusing on both quality of life and treatment initiatives. They have worked to expand access to newer preventive and acute medications such as Botox and anti CGRP. 

They have participated in working groups to evaluate French and European protocols, contacting the Agence National de Security du médicament (French drug safety agency) and working to influence price negotiations with the Commission d’Evaluation des Produits de Sante (National Commission for Health Products). 

La Voix de Migraineux also carries out press campaigns to increase awareness of medications and works to mobilize, improve information and increase the number of trained and informed healthcare professionals. 

As they look toward 2024, they hope to do more national work to raise awareness and improve quality of life for people living with migraine. 

 

 

Related Articles

IHS-GPAC_EHHPA
Migraine and Workplace Discrimination
Absenteeism vs. Presenteeism
How to Support Employees Living with Migraine Survey
Four Recent Accomplishments of IHS-GPAC and Its Partners
Managing Chronic Migraine at Work
Migraine Fitness at Work
Education in Headache to Healthcare Providers in Africa Recap
Someone stretching to help relieve a migraine
Working in retail with migraine, as seen here
National Employee Wellness Month, also known as Professional Wellness Month
Partner Recap May 2022
Migraine symptoms
Evelise Patient Story
Factory Workers and Migraine
New Migraine Workplace Program Earns the Recognition of IHS-GPAC
Kat Harrison talks about migraine.
Simple Things About Migraine
IHS-GPAC Partner roundup
Posture in migraine
An Interview with Patient Advocate Rachel Koh
Patient Advocacy in the Workplace
Effects of Untreated Migraine
The benefits of migraine education
Understanding migraine
Migraine at Work
Migraine in the Workplace
What is IHS-GPAC's Workplace Initiative