Ways to Get Involved in the Psoriasis Community
August is Psoriasis Awareness Month and it's a great time to get involved if you aren't already. "How can I get involved?" you might be asking. Well, here are a few ways--
Check out the NPF
The National Psoriasis Foundation (NPF) is a wonderful place to start if you want to find ways to get involved with the psoriasis community. I started with them 5 years ago when I attended my first volunteer conference in Washington D.C. Since then I have worked very closely with them on advocating for patients with psoriasis. Here are a couple of programs the NPF offers:
The One-to-One Mentor Program: Although it’s designed is for newly diagnosed patients, anyone who is having a hard time with psoriasis can sign up and find a mentor. Its purpose is to help connect a person with psoriasis, who maybe having a hard time dealing with the disease, with another who has learned how to cope. This program was the first one I signed up for where I had the opportunity to meet a wonderful mentor who helped me cope with my disease when I was having a hard time. You can also sign up to become a mentor.
Join Team NPF: The NPF has several walks and cycling events across the United States to raise money for research, advocacy, and support programs for patients with the disease. I’ve been involved with the walk myself and help raise over $2,000! It’s a great way to get involved, build relationships with doctors, and meet others with the disease. Click here to see if there is a walk in your area.
The NPF offers a variety of other great initiatives and advocacy programs that you can check out at https://www.psoriasis.org/.
Participate in an online support group
The traditional ways of support groups seem to be a thing of the past. In addition to the community on this site, NPF has an online community, An online community is a great place to meet people online with psoriasis! It’s a safe place to ask questions, share fears, and give advice. There are over 80,000 psoriasis patients on the site, so you are bound to find someone in your area! I met two people where I live and have spent time with them! It’s a really great way to not feel alone with your disease and find people who understand you.
Get in the conversation
Years ago before social media it was hard to find others suffering from psoriasis. Many people hid and had no outlet to safely talk about it, now with online support groups and social media, hiding has become a thing of the past! Here are some ways you can get involved with the psoriasis community via social media:
Twitter: Using hashtags is a great way to connect to others talking about the disease! The most popular hashtags are #Psoriasis #PsA #Chroniclife #Chronicillness #Spoonies #PsoriasisAwareness. Different organizations also provide twitter chats where participants use a specific hashtag to participate, which usually last 30 mins to an hour. PlaquePsoriasis.com is @Psoriasis_HU on Twitter and we are using the hashtag #PsoAware2016 for Psoriasis Awareness Month.
Facebook: This site is not only a great way to connect with friends and family but also others with specific interest. If you put “psoriasis” in the search box on the site a variety of groups for psoriasis will pop up. I am currently a member of a popular Facebook group “Overcoming Psoriasis.” It’s a safe place to ask questions and share pictures without being judged. PlaquePsoriais.com on Facebook is PlaquePsoriasisdotcom.
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