A serious medical condition can have significant impact on a person’s health and quality of life. Support groups can be valuable resources for individuals, as they provide a platform for sharing experiences, seeking advice, and finding emotional support from others.
Here are some places to try…
Online Health Communities: Websites and platforms like Inspire, HealthUnlocked, and RareConnect host various health communities where people can connect, share information, and find support.
Online Forums and Social Media Groups: Many support groups exist on popular social media platforms and health-related forums, such as Reddit, Facebook, and X.
Patient Advocacy Organizations: Various patient advocacy and rare disease organizations provide support for individuals. Examples include The Mastocytosis Society and the Mast Cell Action Group.
Local Meetup Groups: Check websites like Meetup.com for local support groups or rare disease support groups. These groups often organize in-person meetings.
Healthcare Provider Recommendations: Your healthcare provider may be aware of local or online support groups. They can provide guidance on finding appropriate resources.
Social Media Hashtags: You can use relevant hashtags on social media platforms like X and Threads to connect with others. For example, search for or use hashtags like #MastCell, #MastCellActivationSyndrome, #MCAS, or #RareDisease.