Social Media Groups for CSS / EPGA

This is a living page.  It will change often, Please check back  for new updates and I will send through a blog post when I make any significant changes or additions

feedthefears

FaceBook Groups

A reminder on Public verses CLOSED groups on Facebook.  
In a closed group ONLY the subscribed members can see your postings.  If you post to these groups in will not be seen on your timeline for your friends to view. 
A Public group means your posting to that group may be viewed on your timeline and by all your friends and maybe even friends of friends….

Vasculitis Foundation

  • The Vasculitis Foundation (www.vasculitisfoundation.org) advocates for early diagnosis, leading edge treatment, research, and ultimately a cure for all types of vasculitis. The foundation also supports and empowers patients through education and awareness.
  • closed group over 3,200 members

Vasculitis-UK (Stuart Strange Vasculitis Trust)

  • THE UK’s number one Vasculitis charity, run totally by Volunteers who all have Vasculitis themselves for People with Vasculitis. Founded in 1992 as the SSVT.
  • closed group over 1,400 members

Churg Strauss Syndrome Association

  • A nonprofit organization dedicated to supporting and educating patients and their families who are afflicted with Churg Strauss Syndrome.  The CSSA works toward raising public awareness about CSS and provides assistance in understanding the disease and treatment process. We hope to stimulate and support research into the cause and cure of Churg Strauss Syndrome.
  • closed group over 700 members

Churg Strauss Syndrome Support

  • Learn about CSS and support the research.
  • closed group over 290 members

Churg Strauss Friends

  • This group is a closed group meant to provide an outlet for those with CSS or those with family members to share, vent, ask questions or talk about anything that they wish to in order to gain support. This disease affects all aspects of our lives and this group is a safe place for us to come to share.
  • closed group over 450 members

Vasculitis: More Common Than You Think. More Serious Than You Know

  • This group is to help spread awareness for vasculitis. This is a place where people can post their ideas about how to help raise awareness and stories that feature vasculitis. Our goal is to help patients help themselves and gain more “buzz” for these diseases which will lead to more research and hopefully, a cure.
  • closed group over 1,200 members

Vasculitis

  • This group is for anyone who has any type of Vasculitis disease as wells as their friends and families.  Basically this group is just to raise awareness and if anybody has a story they want to share.
  • PUBLIC group — over 920 members

Vasculitis Wellness Group

  • closed group over 700 members

 

Facebook  Pages you can ‘like’ to learn more about CSS, Vasculitis or Chronic Illness

Vasculitis Foundation

But You Don’t Look Sick

 

Pinterest Pages 

(You must be a member or join Pinterest to view most of these pages)

 

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