9 Organizations Psoriasis Patients Need to Knowby Alisha Bridges Patient Advocate
1. The National Psoriasis Foundation
Back in 1966, a tiny classified ad in an Oregon Newspaper started it all. Now, the NPF is the leading organization in helping those who are battling psoriasis. This organization has personally been a tremendous help in my journey with battling my psoriasis, finding support, and advocating for my disease. Since 2007, the NPF has had hundreds of walks/runs raising close to 10-million dollars in funds to support patients and psoriasis research. Check them out at www.psoriasis.org and indulge yourself in everything the NPF has to offer.
2. Talk Psoriasis by Inspire
The traditional format of support groups have somewhat disappeared, making way for other forms of communication . Talk Psoriasis is an online support group servicing over half a million people in 60,000 different communities.
This website was what catapulted me into psoriasis advocacy. Before joining the site, being an advocate for my disease never crossed my mind. In 2011 I became frustrated with hiding my disease and living in fear. I created a journal post on Inspire called “My Suicide Letter.” The post wasn’t about actually killing myself, but killing those parts of me which I feared, hated about myself, and disliked about my psoriasis -- so that I could truly live life.
This site connects you with thousands who have psoriasis and gives support in any department you need. This site literally changed my life. Sign up today and find a friend in your community at www.Talkpsoriasis.org.
3. Quality Care
This new and upcoming site is dedicated to those with psoriasis, and provides resources which involve assisting with the everyday challenges. This can include handling treatment options, physiological and even managing the emotional impact of this trying disease. You also have the option of providing your cell phone number to receive text alerts and updates on a variety of topics dealing with psoriasis.
I personally receive the alerts -- it’s nice to receive a text when I least expect it that encourages to live despite my psoriasis. There are also some newer features coming to the site for patients to enjoy. But in the meantime, take a look at what’s already most popular among users, at http://psoriasis.qualitycarebyleo.com/.
4. Psoriasis Speaks
Psoriasis Speaks is not only a cool site to learn more about psoriasis and coping methods -- they also offer a “Beneath the Surface Kit” for free. The kit contains in-depth treatment options, helpful information about the cause of psoriasis, and tools to help you or a loved one manage the disease. I ordered mine today, and I can’t wait to see what’s in store.
This site also allows you to connect with others who are dealing with the disease, and also provides personalized support formulated around your needs. https://www.psoriasis.com/
5. Picture Positivity
I was shocked when La La Anthony (Celebrity TV Host, Designer, Entrepreneur) revealed that she was battling psoriasis. For years I watched her grace my televisions everyday on MTV for the hit show Total Request Live. Never in a million years would I have thought we would have that much in common.
Her encounter with psoriasis influenced her to create a site called www.picturepositivity.com, which is dedicated to inspire those living with the disease by presenting an opportunities for patients to show off their spots proudly. I’ve never seen so many beautiful and smiling faces on one site about psoriasis, which really has been refreshing to see.
National Psoriasis Foundation
6. Psoriasis Connect
When you first log on to www.psoriasisconnect.com they waste no time giving you a pop quiz on psoriasis, which is fun! After you answer, they ask if you would like to learn more about the particular issue questioned. They also provide real patient stories of those who are battling with psoriasis to help encourage and inspire those suffering from the disease. If you don’t feel like reading an entire article, they give quick tips for you to review at your own leisure.
YourCareMoments is a very unique site, unlike any other in the psoriasis world. This site pays psoriasis sufferers to share their story. The information from the surveys will be analyzed by YourCareMoments and then sold to Biopharmaceutical companies to help them better understand the patient healthcare experience, ultimately assisting them in creating a better experience for you the patient. I have signed up myself and received a few surveys. Payment is provided through PayPal. Log on to YourCareMoments and get started today.
8. The Psoriasis and Psoriatic Arthritis Alliance (PAPAA)
In 2007, two organizations became one in matrimony. Well not really, but the Psoriatic Arthropathy Alliance and Psoriasis Support Trust decided to merge their efforts by becoming one. Now known as The Psoriasis and Psoriatic Arthritis Alliance (PAPAA), this group is dedicated to working together to provide services for patients in need by “providing a listening ear,” or giving advice about the most modern up-to-date treatment options.
9. The Internal Federation of Psoriasis Associates
This same crew helped launch World Psoriasis Day which happens every year on October 29th. This website is dedicated to making a difference for psoriasis sufferers around the world. So far, the organization has helped establish and develop psoriasis associations in countries where they did not previously exist or that needed support. Their mission is “to be the unifying global voice of all psoriasis associations, supporting, strengthening, and promotions their cause at an international level.” Check out http://www.ifpa-pso.org/ and see how you can get involved today!