Social media’s positive impact on rare disease
There has been a lot of negativity regarding how social media is affecting society today. But for those suffering from a rare disease, social media is an invaluable tool allowing them to make links across cultural and geographic boundaries like never before.

Connecting to much needed communities
Social networks allow those affected by rare disease to discover that they are not alone and form family-like bonds with others who share their affliction. In many instances, those suffering with a rare disease find it easier to share their experiences with online acquaintances than extended off-line family. Being part of a rare disease community:

  • brings hope
  • fosters education
  • builds lifelong relationships

Speeding up diagnosis
With an average of 8 years to receive an accurate diagnosis, patients can be helped by social media on their rare disease journey through the help of others who have already been through the diagnostic wringer. Properly identifying symptoms and landing on a valid diagnosis can seem insurmountable with obstacles such as geographical location, lack of information, or the inability to work with a multi-disciplined team of experts. Social networks can remove many of these hurdles and allow rare disease sufferers access to options never before thought possible.

Aiding research and development of new treatments
There are 7,000 known rare diseases but only about 600 FDA-approved orphan drugs. The rarity of each of these diseases poses many threats to discovering new treatments. For researchers, social media offers a quicker way to find and recruit the number of patients needed for a clinical trial, while giving patients access to treatments they would normally not have been aware of.

The future of social media’s role in rare disease should not be underestimated. The ability to connect the experiences of clinicians, patients, caregivers, and payers to work with the rare disease community further empowers the sharing of knowledge, data, and best practices to fill the many unmet needs in rare disease both today and in the future.

More news