In fact, for rare disease nonprofit organizations like the IPPF, it is a huge benefit for us to be on social media, as well as to have our pemphigus and pemphigoid community present on social media.
For those affected by a rare disease, social media is great for creating awareness, providing information, and most importantly — to create a support network for patients.
By “liking” our social media pages and/or by having discussions about pemphigus and pemphigoid on social media, you are helping to create awareness for these rare diseases. The numbers of followers we can get on our social media pages is directly linked to the scale and scope of the interest we attract from companies in the rare disease industry.
Every time that you “like” or “share” one of our posts you are personally helping to create awareness of pemphigus and pemphigoid. Even if one more person knows about pemphigus and pemphigoid who didn’t before, that is a victory.
The use of hashtags (#) is also very important in social media. For example, when you are using the hashtags #healourskin, #pemphigus, #pemphigoid, or #raredisease, you are telling the social media world (which is clearly huge!) that you are having a conversation about those topics. When someone clicks on those hashtags, he or she will be linked to every post that has used that particular hashtag. This is a great way to show the world that pemphigus and pemphigoid are important topics that need to be talked about.
Social media is also a great tool that the IPPF uses to get information out to a large audience efficiently and at little to no cost. Rare disease nonprofits like ourselves are usually operating on small budgets, so allowing us to use tools like social media is very effective for us.
The pemphigus and pemphigoid community is spread around the globe, so when we need to post information right away it is easy for us to create one post on our Facebook page rather than sending out thousands of emails.
Social media is also a very effective tool when we need to share information with the P/P community that originates with other entities. For example, a company may post a new clinical trial starting for mucous membrane pemphigoid patients. When we see that post, we can simply “retweet” the information or “share” the post.
A similar situation occurs when another patient or caregiver posts a question, new information, or something inspirational. We can share it very quickly with our community via social media.
Social media is important to the rare disease community for many reasons, but perhaps the most important is to be able to be connected to others affected by the same rare disease as you. For the pemphigus and pemphigoid community, we see many new patients and caregivers being connected to one another every day through our social media pages.
This also a great reason, again, to use our hashtags! One of the ways that we use hashtags is by using the IPPF’s unique hashtag: #healourskin.
You may have already spotted our signature #healourskin orange sunglasses. If you post a picture wearing the glasses and use #healourskin, others who click on the hashtag will be connected to all others who have used it. Imagine someone, recently diagnosed, wondering who else may have this disease. That person finds us on Facebook and sees the hashtag #healourskin being used. She clicks on the hashtag and discovers faces of others who are affected by the same disease that she is. Hashtags can be very important in connecting others together.
If you aren’t on social media I would strongly suggesting signing up for some of the social media outlets available just to become connected with others in the P/P community. If you are on social media and haven’t started following us yet please go to:
facebook.com/healourskin and be our fan
twitter.com/healourskin and retweet us to your followers
instagram.com/healourskin to see awesome pictures from our community
pemphigus.org/rareconnect to share your story and to read others in the pemphigus and pemphigoid community.
Please “like” and “share” our posts on Facebook, “retweet” us on Twitter, and “like” our photos on Instagram.
Don’t forget those hashtags!
Together we can create awareness. Together we can come together to create a better world for pemphigus and pemphigoid patients. ippf