Rare Disease Male Support Group – Support in a safe space!
Are you a Rare Disease Male looking for support?
How about joining this Rare Disease Male Support Group which is run by three rare disease patients. These guys have a passion to provide a space for other men like themselves who are patients or caregivers connected to rare disease life. Once a month they host a meeting on their private group on Facebook for members to talk freely about their issues. A place to find and give support as a community when needed. It is difficult for guys to open up so this space provides a great place for them to do just that!
Fibro Flutters are proud to support this group and also are grateful to it’s co-founder David Ross for being a valuable Admin Leader in our Mental Health Group. Our group is open to men and women affected by mental health.
Rare Disease Male Support Group mental health meetings with hosts:
NEXT MEETING: Wednesday 15th Sept 5pm GMT.
Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.
If you would like to find out more information about the ‘Males with rare disease’ mental health meetings with hosts: monthly meetings, please click the button below to find the Facebook group:
Rare Disease Male Support Group
“The idea of this group is to provide support for male rare disease patients & caregivers who are living or impacted by a rare condition. It’s focus will be on the effects this has on your mental health and it will be a safe space where we can discuss these feelings and provide support by talking , listening and building each other up.”Rare Disease Male Support Group – Facebook
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients