Resources, Associations & Specialists 

 Associations & Support Groups

• Les Brûlures Invisibles – Support, information, and network for patients and their loved ones

• Maladies Rares Info Services – Information and directory of associations (www.maladiesraresinfo.org) -    0 800 40 40 43 (calls and services free of charge)

• Online patient groups – https://forums.maladiesraresinfo.org/bienvenue-dans-forum-erythermalgie-erythromelalgie-syndrome-oreille-rouge-t7567.html 

• Les Enfants de Feu - https://les-enfants-de-feu.assoconnect.com/

• English-speaking forum : https://livingwitherythromelalgia.org/

👥💬 Join the discussion on the Rare Diseases Forum! 
A thread dedicated to erythermalgia has been created by our association to encourage discussion, support, and the sharing of experiences among those affected:

🩺 Professionals & Specialists

For appropriate follow-up, consult:

• Vascular Doctors in France: Prof. Pistorius (CHU Nantes), Prof. Senet (Hôpital Tenon – Paris), Dr. Laroche (Avignon / CHU Montpellier), Prof. Sarlon (Hôpital de la Timone – Marseille)

• Neurologists & Pain Specialists in France : Château-Gontier Pain Evaluation and Treatment Center (CETD) provides chronic pain management for patients with erythermalgia.
• Internal Medicine Doctors in France: Dr. Beaumesnil (CHU Angers), Dr. Gaudre (Hôpital Château-Gontier)
• Dermatologists in France: Dr. Misery (CHU Brest) 
• Psychologists

💻 Reliable websites & references

• Orphanet: Rare disease database (www.orpha.net)

• Maladies Rares Info Services: resources and contacts for patients and families: 0 800 40 40 43 (calls and services free of charge) 

• Prior Maladies Rares: a program offering support to anyone facing a rare disease and/or rare disability living in the Pays de la Loire region (https://prior-maladiesrares.fr/)

• The Erythromelalgia Association: https://burningfeet.org/ (affiliated with the Mayo Clinic in the United States)

• Filnemus: one of the 23 Rare Disease Health Networks (FSMR) dedicated to neuromuscular diseases (https://www.filnemus.fr/carte-interactive/ou-consulter)

• Scientific Publications: articles and research on erythermalgia:

- https://www.realites-dermatologiques.com/erythermalgie-quand-y-penser/

- https://medvasc.info/archives-blog/erythermalgie-le-point

- https://erythromelalgia.org/wp-content/uploads/2019/01/Cohen-Medical-Treatment-of-EM.pdf

👉 Help us spread the word

Flyer from the association Les Brûlures Invisibles 

This flyer can be shared with relatives, healthcare professionals, and relevant organizations to raise awareness about erythermalgia.