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2018 Top 10 Best in Show: Communities

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  

WEGO Health Best In Show: Community Award – As a patient, becoming part of an online health community can be life-changing. The Best in Show: Community category recognizes the hard work of the Patient Leaders who create and manage these dynamic communities. These Patient Leaders have mastered the art of creating an inviting space for newcomers while keeping a safe space that people respect, rely on, and recommend to friends and family. Through active community management, engagement, and moderation, they’ve fostered an environment of healing, support, and hope!

 

Tom Mitchell

Chronic Illness Patient Leaders

Facebook | TwitterInstagram

“Hi, I’m Tom & I suffer from multiple chronic illnesses. I was diagnosed with type 1 diabetes on my 10th birthday & Severe M.E 4 years later. Since I was diagnosed with M.E I’ve had some horrendous symptoms such as paralysis in both my legs, extreme chronic pain everywhere in my body, gastrointestinal problems such as gastroparesis & GI dysmotility and much more. I have a PEG-J feeding tube for medications & liquid food that goes straight into my bowel, and a central line in my chest for intravenous fluids. I’ve also been diagnosed with depression & anxiety so mental health is a huge struggle for me as well, but I try to look for the good in everything I do.” Connect with the 2018 WEGO Health Awards Best in Show: Community winner.

 

 

Natalie van Scheltinga

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

“Natalie is the founder of The Unchargeables an online chronic illness support group. The goal of The Unchargeables is to let people know that they are not alone in their struggles and provide 24/7 emotional support. She can’t do it alone though! The community is run by a small army of volunteers who make sure that the community stays active and there is always someone online to offer support. We call ourselves Chargie’s. In the shop we offer a broad selection of disease-specific awareness products. Shirts and other products with slogans that show on the outside how you feel inside. Every month we host a giveaway of $100 shop credit, so everybody has an equal chance to own Chargie gear.” Learn more about Natalie and The Unchargeables.

 

 

Rick Davis 

Cancer Patient Leader

FacebookTwitter

“Since my own T3 prostate cancer diagnosis in 2007, I am committed to helping others forge an easier path. First I found no exercise support for people living with cancer and created www.medafit.org. I also saw men placed on hormone therapy received little to no support and set about slowly changing that situation. Working with UCSF, and support groups we have made significant headway. In 2010 I noticed a total lack of live audio-visual virtual support groups. We piloted prostate cancer groups & in 2016 formed Answer Cancer Foundation. Today www.ancan.org runs 19+ monthly groups soon to host non-cancer groups. We are the online leader providing peer-to-peer live virtual support groups.” Click to learn more about their support groups and services.

 

 

 

Greg Pierce

Cancer Patient Leader

Facebook | Twitter

“Community Mgr./Social Media Mgr. for WhatNext.com, a three-time cancer survivor of 2 types of cancer (Hodgkin’s lymphoma and Head and Neck Cancer), a Voice of Hope Speaker for the American Cancer Society. I also lost both Parents to cancer, which combined with all of my personal cancer experience led me to try to give back, fight back, and make a difference in the lives of those who are currently in the fight, and those to come. WhatNext is the Internet’s leading source of first-hand cancer experiences and a place where cancer patients, survivors, caregivers, and their family and friends can come to connect, share, compare, ask questions and get the support they need to fight this disease.” Click here for more on WhatNext.com.

 

 

 

Lee Good 

Autoimmune Diseases Patient Leader

Facebook | Twitter

“I am an advocate for Fibromyalgia and autoimmune diseases. Having Fibromyalgia and 3 autoimmune conditions myself, and finding it difficult to get a diagnosis I wanted to help raise awareness of these conditions. I run a very active Sjogren’s Syndrome page on facebook, and also a monthly newsletter keeping people up to date with the latest research and trials. I have a blog and website about autoimmune diseases which focuses on giving reliable autoimmune information. In the fibromyalgia community, I provide resources to help others promote Fibromyalgia awareness including the Fibro Blogger Directory, a weekly Fibromyalgia link up and a Facebook group and a daily twitter feed.” Learn more about Lee’s community.

 

 

 

#GetYourBellyOut

IBD Community

Facebook | Twitter | Instagram

Founded in March 2014, the #GetYourBellyOut campaign aims to support those affected by inflammatory bowel disease. #GetYourBellyOut encourages people to take a photo of their belly & post it to social media. The idea is to showcase that whether you have an ostomy, scars or no visible signs at all we’re united in the fight against IBD. #GetYourBellyOut is keen to be the voice for many in the IBD community by highlighting the areas which matter most to them. We aim to expand our reach, boost confidence, educate & inspire. The campaign has blossomed with our ‘bellies’ having helped to raise £76,000 for Crohn’s and Colitis UK. For a better tomorrow, we must lay strong foundations today. Learn more about the #GetYourBellyOut campaign.

 

 

Sam Moss

Chronic Illness Patient Leader

Facebook | Twitter

“In 2014 I medically retired from my position as Executive Manager, in Financial Services, a role I loved. My body had decided to work against me and I was diagnosed with severe bowel prolapse, Rheumatoid Arthritis, other autoimmune diseases, and a complex idiopathic Rare Bone Disease. I have constant pathological broken bones and a permanent colostomy. Life is a challenge but still fulfilling as I blog about ” My Medical Musings” living with an unpredictable complex disease. My passion has always been helping people to achieve their full potential. I now have the honor of supporting others, living with complex illness, through my online community “Medical Musing With Friends”. Learn more about Sam’s community.

 

 

 

 

Fibromyalgia Care Society of America 

Facebook | Twitter | Instagram

Fibromyalgia Patient Leaders

Founded in 2015, the Fibromyalgia Care Society of America (FCSA) is devoted to revolutionizing how fibromyalgia is cared for in this country by introducing a comprehensive holistic approach to care, family support and support groups. The organization was founded by Mildred Velez, who has been living with fibromyalgia since 2007, in response to the lack of direct services for those living with fibromyalgia and to the dearth of dedicated medical care and support. Mildred, along with a dedicated board of trustees, has developed a concise and direct approach to helping those living with fibromyalgia and their families. The FCSA is dedicated to equality in care and bringing relief to all. Learn more about FCSA’s mission. 

 

 

Purple Wings Charity

 

 

Ostomy Patient Leader

Facebook | Twitter

At Purple Wings we want to show the world that having an ostomy isn’t all that bad. Our mission is to help those with an ostomy regain confidence and self-esteem. We do this through our ‘Time For Me’ grants which we offer to those who have had surgery to form a stoma, to help them regain confidence and self-esteem. We hold events throughout the year which are a way to bring those with an ostomy together. For more information on events in this community, click here. 

 

 

Cordelia Rose

Rare Disorder Patient Leader

Facebook | Twitter

“I’ve been a spokesperson for Maladaptive Daydreaming since 2009 and have run a website and been interviewed by various publications, such as Scientific American Mind, CNN.com, and New York Mag’s website. I’m determined to raise awareness for this little-known condition due to the horrible issues facing my site members, who often feel suicidal and face abuse when they try to discuss it openly. I want to create a world where they can live openly without fear. They’re afraid to speak out. I was born to be bold, so let me be bold for their sake and create a better world for them. I also spend my summers helping the homeless by handing out water and snacks.” Connect with Cordelia.

 

 


 

A HUGE thank you to these Patient Leaders and all of the Patient Leaders managing support groups or online communities for patients all over the world. For many, the patient community is where they find their hope, so from the bottom of our hearts, we thank you!

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