Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally. RareConnect is a safe environment where privacy is respected and where trusted information is shared via real patient representatives.
RareConnect is a patient-led initiative. Patient organisations partner with RareConnect, itself an international patient organisation, to create communities and provide moderators from within their network.
Each community on RareConnect is moderated by a person living with a relevant rare disease and linked to a trusted patient group. Furthermore all moderators are trained in the use of our online communities charter and supported on a daily basis by a team of community managers.
Accessible Location: No
|Type of Organization||online support|
|Categories||Emotional Support, Medical, Other|
|Services offered in Spanish?||yes|
|Child Care Available?||No|
|Age Range||All Ages|
|Disability Categories||Genetic or Congenital Disorder, Medical Condition|
|Does this organization belong to all disabilities?||No|
|This organization belongs to these diagnoses|
|Is this a statewide service?||yes|
|Email Address||[email protected]|