May 29, 2013

Vasculitis Awareness Month - 5 Day Countdown - Day 3 - Vasculitis Support Groups Online

Here is a detailed list of support groups around the globe on the subject of Vasculitis and blood disorders. Many Facebook groups are also listed near the bottom. 

I hope you can gain the knowledge necessary to help with your; diagnosis, recovery, and support through this rare but deadly disorder.


"Vasculitis Foundation Canada mission is to encourage and support research efforts for the cause and cure for all forms of Vasculitis. To establish rapport with all known Vasculitis patients and try to alleviate the isolation of having an uncommon, life-threatening disease. We want to assist Vasculitis patients and their families with clinical information and coping strategies, to help them develop a strong and positive outlook."



"The Vasculitis Foundation is the international organization for patients with Vasculitis, their families, friends and the health care professionals who care for them. The Vasculitis Foundation advocates for early diagnosis and leading edge treatment for all patients, no matter where they live. In addition, the Vasculitis Foundation partners with researchers around the world to determine the cause and discover the cure for Vasculitis."

========================================= Vasculitis Group:

A personalized support group on Vasculitis created by one of the members of Post your questions and read more information.

========================================= - Vasculitis Support Groups:

"Inspire was created with the belief that patients and caregivers need a safe and secure place to support and connect with one another. We strive to be ethical and transparent, and we never forget that our community is built upon the trust of our members. We place the utmost value on this trust, and maintaining it is our highest priority."

========================================= - Local Support Groups:

"Everything is to be found here about Vasculitis UK, the charity: our aims, goals and objectives, the history, the people who run it, our finances, how you can join and how you can support and be involved in running Vasculitis UK. There is a section here on fundraising and on setting up a local Vasculitis support group."


American Behcet’s Disease Association:

"The American Behcet's Disease Association works toward the following goals: Providing information and support for patients with Behcet's Disease and for their family members and caretakers. Providing current and pertinent educational information to the medical community. Decreasing isolation and stress from the lives of people with Behcet's Disease and their family members."


Churg Strauss Syndrome Association:

"The Churg Strauss Syndrome Association is dedicated to the identification, treatment and cure of Churg Strauss Syndrome. The CSSA is operated and supported by volunteer efforts and is a network of patients, friends, and medical professionals."


Central Nervous System Vasculitis:

"The Central Nervous System Vasculitis Foundation provides information and support to patients, families and the medical community about the rarity of CNSV; it’s devastating impact on lives; diagnosis and treatment in order to improve overall quality of life, affect more positive patient outcomes, to develop effective medical treatments, and to assist in discovering a cure through scientific research."


Giant Cell Arteritis & Polymyalgia Rheumatica:

"Listening - the primary purpose of our group is to listen to how the sufferers and/or carers are coping with these conditions. The Group finds this very helpful. The most common comment we hear at the group is, 'Nobody told me that'. If there is time we then discuss a topic related to our conditions, chosen by the members of the group."


Kawasaki Disease Canada:

"To promote the awareness of Kawasaki Disease among the medical community, childcare providers, and the general public, that is critical to early diagnosis and treatment"


Bruce’s WG & Vasculitis Site:

"To assist Vasculitis patients in getting early diagnoses, effective treatments, and to advise of patient, organization, and scientific resources concerning Vasculitis."


Churg Association:

"The Churg Strauss Syndrome Association was founded in June, 2004 by two patients, Jane Dion (right) and Dr. Carol Kavanaugh (left). Its original purpose was to gain representation on the Vasculitis Clinical Research Consortium which had recently received more than six million dollars in funding for Vasculitis research."


Vasculitis Support NZ:

"Our aim is to provide useful information that is easy to follow for patients, family and friends regarding Vasculitis and how it is treated within New Zealand."


FACEBOOK - Blood Disorder Network:

"A group created by a patient, Martin R. Lemieux who's years of experience is put to good use to help build awareness and support for members suffering from blood disorders, included but not limited to; Vasculitis."


FACEBOOK - 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."


FACEBOOK - Vasculitis Foundation Canada / Fondation vasculites Canada

"Our mission is to support research efforts for the cause and cure for all forms of Vasculitis. To provide information and care to patients and families."


FACEBOOK - Society for Inherited And Severe Blood Disorders (T'dad & T'go Ltd)

"An awareness group for persons interested and living with inherited blood disorders"


FACEBOOK - The Blood Revolution

"A worldwide organization spreading the word about the affects of Blood Disorders."


FACEBOOK - Vasculitis Foundation

"Awareness. Support. Research."


FACEBOOK - Violin for Vasculitis

"Visiting 50 states to raise awareness of vascular disease."


FACEBOOK - Not all Disabilities are Visible

"Not all disabilities are visible - it doesn't mean they're not real."


FACEBOOK - Foundation for Women & Girls with Blood Disorders

"The Foundation for Women & Girls with Blood Disorders seeks to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage. The Foundation works to achieve this goal."


FACEBOOK - Vascular Disease Foundation

"The Vascular Disease Foundation is committed to reducing death and disability for the over 40 million Americans affected by vascular disease."


FACEBOOK - A Rabbit Stuck in a Turtles Shell (Book)

"I've written this book in the hopes to educate, or foster if you will, a guide and insights into the world of the health industry from a chronic illness perspective."


If you are aware of more Vasculitis support groups, please feel free to post a comment below. I hope this helps everyone to gain the answers they are looking for.

Vasculitis Awareness Month - 5 Day Countdown:

  1. Day 1 - Vasculitis Sample Pack from
  2. Day 2 - Treatments for Healing Vasculitis & Vasculopathy:
  3. Day 3 - Vasculitis Support Groups Online:
  4. Day 4 - Vascular Sub-Types:
  5. Day 5 - Vascular Disorders & Diseases:

Martin R. Lemieux

@Blood_Disorder (#TheBloodRevolution)

FB Group:
FB Cause:

1 comment :

  1. Very good Post really i like any post talking about social support group. you can create support groups and share personal blogs. you shall search in Google and Wikipedia about that .... Thanks

    support groups