Be sure to let us know if you have any links that you would like us to add!
CVO believes in empowering patients and families to advocate their medical care through education. CVO would like to help you in every way that we can. We recommend these health related sites to empower you. We want you to feel connected. There are many benefits to connecting with others that suffer. CVO not only has their own support group but oversees several other health support groups.
Second Chance with Saving Grace
SCwSG, Inc. is a 501c(3) international nonprofit organization whose mission is to educate, encourage, enrich people's lives and make their dreams come true. SCwSG is the parent org. for CVO. No matter your challenges or where you live, SCwSG can offer you a place to share your gifts and talents. Volunteer today!
The vasculitis foundation is the largest vasculitis patient group in the world. It is changing the face of vasculitis for research and development while creating a community for all patients living with one of the many forms of vasculitis. As we continue to work in partnership with them we look toward a brighter future for all vasculitis patients. Click for cryo Patient Information Book Enjoy Joyce Kullman, Executive Director's Dr. Diane Dike Radio Show Interview
Coordination of Rare Disorders at Sanford (CoRDS) collects and stores basic contact and clinical information on individuals of any age who have been diagnosed with a rare disease (undiagnosed individuals are also eligible for enrollment). Research is an important way to improve the understanding of rare diseases which may help develop effective treatments. Research into rare diseases is often limited by lack of information and the relatively small number of participants eligible for clinical trials or research studies. Enjoy Liz Donahue's Dr. Diane Dike Radio Show Interview.
A digital podium for communicating thought leadership and innovation. Diane Dike, Ph.D. was invited as a guest writer. Click this link to enjoy the article: Being Diagnosed with Cryoglobulinemia
Invisible Disabilities Association (IDA)
IDA encourages, educates and connects people and organizations touched by illness, pain and disability around the globe.
American Autoimmune Related Diseases Association (AARDA)
Other Helpful Links:
The U.S. National Library of Medicine has a search engine that can give you access to free research articles.
Orphanet Journal of Rare Diseases article about mixed cryoglobulinemia.
OjrdNORD article about cryoglobulinemia- Includes contact information for organizations related to cryoglobulinemia.
Includes images and case histories of cryoglobulinemia patients.
University of North Carolina Kidney Center article about cryoglobulinemia. Includes information about symptoms, how it is diagnosed, and treatments.
Health Blurbs article about possible causes and symptoms of cryoglobulinemia and possible causes of cryoglobulinemic vasculitis.
Cryoglobulinemia & Infections: Hepatitis C (HCV)Article about Hepatits C and Cryoglobulinemia by Gianfranco Lauletta
Scientifica article by Fabrizio Fabrizi about Hepatitis C, Cryoglobulinemia and the possible effects of these diseases on kidneys.
Reference article about cryoglobulinemia. Includes information about epidemiology and physiology.
The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.
The Rare Diseases Clinical Research Network (RDCRN) a "distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community... aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities”.
EURORDIS Rare Disease EuropeRare Disease ResearchLatest Research
OrphanGenetic Alliance-Rare Disease and Genetic Conditions Support Community
The Lauren Currie Twilight Foundation The only self management resource facility for Vasculitis patients in the UK. Featuring tailored services for patients suffering from Vasculitis.