Patient Advocacy Groups

Alliance for Cryoglobulinemia is an inclusive network of patients, caregivers, family, medical professionals and other supporters dedicated to improving quality of life for people with cryoglobulinemia. For more information please contact Marianne Vennitti, 856-488-4085 or Eileen Propp, 925.315.7273.  Visit their website.

The European EGPA Study Group was established in 2018 with the intention to create a network of scientists and clinicians from European EGPA referral centers, gathering clinical and scientific excellence and expertise to promote collaborative clinical and translational studies, to enhance knowledge about the disease, and to develop new recommendations about its diagnosis and treatment.

Visit their website for more information.

The assignment of the German Vaskulitis Support Group has been and will be to give the necessary support to patients and their relatives to enable them to cope with the serious diagnosis. Exchange among affected people, for example in regionally established groups, is tremendously important, because a vasculitis-patient will usually be the only one among his family or friends, among his doctor’s patients and in many cases even in his hospital.  Visit their website.

The Kawasaki Disease Foundation is partnership of parents, patients, and professionals dedicated to advancing Kawasaki Disease issues. The Foundation focuses on awareness, support, and research.  Visit their website.

NORD is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.  Visit their website.

We’re a team of healthcare writers and professionals who are committed to helping people with rheumatoid arthritis live full, happy lives despite their diagnosis.
121 S. Orange Ave, Orlando, Florida  32801
Email or 877.284.0235

The mission of CVO is to champion advocacy programs regarding the care, treatment, research, diagnosis AND the use of service dogs for those suffering from cryoglobulinemia and associated conditions. CVO was established to unite patients and the medical community in managing and drawing attention to cryoglobulinemia, a rare blood disease that the founder/director Dr. Diane Dike has battled for 23+ years. Visit their website.

The LCTF was established in October 2010 in the memory of Lauren Currie who died from Vasculitis and specifically the rare condition, Wegener’s Granulomatosis (GPA) at the age of 15. The Foundation is  committed and focused on the following objectives:  To raise and maintain a national awareness of vasculitis; to fund and produce educational and guidance material on vasculitis; to provide grants for vasculitis research.  Visit their website.

The PAN Support Network 2012 (PSN) is a not-for-profit organization with more than 700 members world-wide. Patients, caregivers, physicians, research specialists provide invaluable education and support through a mailing list, live chat sessions, and other web resources.  Visit their website.

The foundation was founded in the memory of Ricardo, who passed away at age 32 of complications from vasculitis. The foundation organizes awareness and fundraising events to increase understanding of vasculitis in Jamaica. For more information please email Olive Creary.

The Vasculitis Foundation is an organization of and for patients with primary vasculitis, their carers and other relatives. In addition, it wants to be a source of information for healthcare professionals and other interested parties. Visit their website.

Vasculitis Foundation Canada is a not-for-profit Canadian Corporation. It evolved in 2008 from Wegener’s Granulomatosis Support Group of Canada which was established in 1998. This group is made up of patients, families and care-givers for 15 vasculidities. Our main purpose of patient support extends into avenues such as education and research. Dual membership status with Vasculitis Foundation gives everyone an open forum of world-wide information and medical specialists. Our website gives an overview of group activity and contact information.  Visit their website.

Formerly the Stuart Strange Vasculitis Trust, the Vasculitis UK membership consists of a national network of support groups, helping the Trust to achieve its aims, offering support to sufferers, their families and friends both at home and abroad.  Visit their website.

Nous avons organisé une trentaine de réunions publiques d’informations sur nos maladies rares, dans les divers Centres Hospitaliers de France, qui ont réuni environ 2.000 auditeurs. Les intervenants tous spécialistes membres du GFEV (Groupe Français d’Etudes des Vascularites) furent au nombre de 52. Nous avons pu compter sur l’aide très précieuse de 42 médias (Presse écrite, Télévisions, Radios…) que nous remercions très sincèrement.  Visitez leur site web.

For more information on the West Country Support Group please contact Charlotte Stoner.