Rare Disease Support Groups: a unique online platform launched by MENA Organization for Rare Diseases to connect people involved in rare diseases
MENA Organization for Rare Diseases has taken a significant step toward its mission to connect people involved in rare diseases by starting a unique online platform allowing patients and their caregivers and family members, healthcare professionals, researchers, advocates, and other people involved in rare diseases to join disease specific groups: https://connect.menararediseases.org/
This platform, the Rare Disease Support Groups, allows patients with rare diseases and their caregivers and family members to connect with others having similar diseases giving them the opportunity to freely communicate to share personal experiences, exchange knowledge, and offer valuable advice through a chat box. Furthermore, a feed box in each group allows for posting disease-specific information and announcements about available diagnostic and treatment options and the latest advancements in research and ongoing clinical trials related to the rare disease group.
Rare Disease Support Groups platform can be accessed from the website of the MENA Organization for Rare Diseases (https://www.menararediseases.org/) or directly through the link:https://connect.menararediseases.org/. After entering the platform, a person will have the ability to review the list of the existing rare disease groups and to join the rare disease group he/she is interested in. There is an option to create a new group if there is no group for the desired rare disease yet.
This platform is a centralized hub, not only allowing people with rare diseases and their families to exchange experience and advice, but also enabling researchers and healthcare professionals to share information that give people with rare diseases and their families more knowledge and keep them informed about new advancements related to their conditions.
MENA Organization for Rare Diseases has been established to serve and support people with rare diseases in the region of Middle East and North Africa (MENA). The goals of MENA Organization for Rare Diseases are to educate and spread knowledge about rare diseases, connect patients and doctors to exchange knowledge and experience, and support people with rare diseases and their families. Establishing this platform can make a significant contribution in connecting people involved in rare diseases.
Published on: 19 June 2023