My life changed in 2011. I lived with psoriasis for 15 years in silence, that was until I linked up with the National Psoriasis Foundation. Check out these 5 organizations you should get involved with if you have psoriasis.
The National Psoriasis Foundation
The NPF is the leading organization for those living with psoriatic disease. Since 2007 they have raised over 10 million dollars for advocacy, research, and initiatives for everything psoriasis. They have several opportunities for those in the psoriasis community to connect in person and fundraise through walks, cycling, bingo, and “DIY” events. They also provide workshops which highlight a variety of topics which include coping, managing, quality of life, treatment and much more. They also have a one-to-one mentor program for those seeking to be a mentor or are in need of mentorship. Every other year they have the Volunteer Conference, which allows hundreds of people with psoriasis to meet in one place to connect with one another, as well as with researchers, doctors, and staff from the NPF. Most recently the NPF created a new platform called the Patient Navigation Center, which helps patients with access to care, provides emotional support, wellness coaching and so much more. I could go on and on about what the NPF has to offer but you should check it out yourself.1
The traditional ways of in-person support groups are far and few. Talk Psoriasis is an online support group for those living with psoriasis or for caretakers or family members of someone with the disease. This platform was the first community I joined when I decided to seek help for coping with my disease. Right now there are over 100,000 people registered for this site. Being a part of this community allows you to talk to others living with psoriasis, ask questions, share pictures, discuss your biggest fears etc. It’s one of the biggest online support groups for psoriasis you can find. It’s a safe, non-judgmental place for all dealing with the disease.2
This is another online support group, but it’s a bit different than Inspire… This support group is on Facebook and currently has 5,000+ members. This group is another safe place for a person with psoriasis who may want to ask questions, gain advice, or find support. There is never a dull moment, members are very active and different discussions take place everyday within the group. It’s a closed group to help those within the group maintain privacy. Check out the group to find out what those with psoriasis are currently discussing.3
The International Federation of Psoriasis Associations
If you want to get involved in the psoriasis community in a global way, this is the organization to check out! Worldwide there are at least 125 million people who have psoriasis. Founded in 1971, the IFPA’s goals are to “…improve living conditions for patients, raise awareness of psoriasis and psoriatic arthritis and cooperate with fellow stakeholders.4” They are also responsible for World Psoriasis Day, which started in 2004. Each year has a different theme dedicated to all things psoriasis.
This is your chance to get involved with psoriasis in a different kind of way, and that’s through research! You are considered a psoriasis expert because you are living with this disease everyday. Citizen Pscientist gives those with psoriasis an opportunity to get involved with psoriasis research by completing a survey, created by researchers, with data you can then compare yourself with others who have taken the questionnaire.5
Editor’s Note: PlaquePsoriasis.com also has new community features that allow you to connect with other community members in new ways! You can ask questions and get answers from the team and other community members, create a user profile that allows you to share as much (or as little) about yourself, a new member search and friend finder tool to help if you are looking for someone who can really relate to what you are experiencing and a feature that allows you to post updates including “How are you today.” You can also find PlaquePsoriasis.com on Facebook and Twitter where you can connect with others as well!