RQMO now has a community of partners, bringing together patients, caregivers and all motivated people affected by rare diseases. The aim is to encourage the exchange of ideas, share experiences and develop concrete projects that will have a real impact for people living with rare diseases.
Each month, virtual café-rencontres will offer a space to listen to your stories, ideas and suggestions. Together, we’ll be looking to put in place initiatives that will make a real difference.
To join this community, contact us.
Here is the list of diseases represented by RQMO’s partners:
- Myasthenia gravis
- Brooke-Spiegler syndrome
- Ehlers-Danlos syndrome (EDS)
- Postural orthostatic tachycardia syndrome
- Stiff person syndrome
- Mayer-Rokitansky-Küster-Hauser syndrome
- Reactivation of varicella-zoster virus without rash
- Oculo-facio-cardio-dental syndrome
- MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes)
- KAT6B syndrome
- Intestinal metabolic bromhidrosis syndrome (IMBS)
- Treacher-Collins syndrome
- Slipping Rib Syndrome
- Root canal syndrome of the perforating branch of the intercostal nerve
- Ichthyosis congenita
- Pemphigoid of the ocular mucosa
- Hermansky-Pudlak syndrome
- Complex Regional Pain Syndrome
- DHX30 syndrome
- Intraosseous hemangioma of the cranial vault
- Acute intermittent porphyria