Rare Diseases: Patient-To-Patient Blogs

We have always thought this was a great idea and we should also include families and carers we need to have this type of feedback to help build patient centres of excellence it is vital patients and their carers and families can set up networks within their own areas and it also vital for patients and families to set up contacts within other towns to help them fight isolation it also helps with interaction with others and removes the feelings of being on their own,

Orphan Druganaut Blog

Online patient Blogs provide opportunities to make global connections with others experiencing the same challenges and ups and downs with one’s disease or illness. Blogs that are created and maintained by rare disease patients can be a vital source of emotional support, a forum for helpful discussion and sharing of resources, information and diagnostics, sharing of personal experiences with different drugs and treatments, and just providing a spot where the patient can communicate with others in the same situation. Blogs become a “safe space” for rare disease patients to share. There can be positive shares, but there can also be times of confusion, pain, grief, and sadness. Blogs are a place where global stories can be expressed and heard. Blogging for a rare disease patient can increase empowerment, communication and social support, and helps one not feel alone but part of a community where everyone understands what one is experiencing and going through. Blogs can be…

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About jigsawtree

Hi my name is Terence Hoey I am CEO of The Ultra Rare Disease Disorders & Disabilities Foundation LTD a non for profit charity our address is Palmerston Road Sydenham Belfast Co Antrim Northern Ireland BT41QD

Posted on May 28, 2015, in Uncategorized. Bookmark the permalink. 1 Comment.

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