The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD has been supportive of the Alliance for Cryo by partnering with us to create an Internationa Cryoglobulinemia community at RareConnect. RareConnect is a partnership program between EURORDIS, the European Rare Diseases Organisation & NORD designed to foster an online community for people living with rare diseases.
We, the Alliance for Cryoglobulinemia, are proud partners of RARE Project, a non-profit 501(c)(3) charity committed to serving the 350 million people around the world suffering from over 7,000 RARE diseases, 95 percent of which have no therapy. The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. *Global Genes Project supports Alliance for Cryoglobulinemia by highlighting Cryoglobulinemia Awareness videos.
LCTF is a charity (Registration Number SC041934) set up in Nov 2010 dedicated to National Vasculitis Awareness, Education, Research & Patient Support within the UK. Our public page updates supporters on our work with Vasculitis. The charity was established following the death of Lauren Currie, aged 15, from Wegeners Granulomatosis (GPA). Since its formation, it has achieved significant progress in awareness and in the funding of research and support services in Lauren’s memory. *The Lauren Currie Twilight Foundation has added the video Be-Rare: A Public Service Announcement. Cryo Explained featuring Dr. Paul Monach of
of Boston and the Vasculitis Clinical Research Consortium.
Sanford Research – Coordination of Rare DiseaseS Sanford Research is committed to finding cures and advancing therapies for rare diseases. Through the CoRDS program, you can help advance this mission. Patients who participant are helping researchers at Sanford and around the nation find answers about rare diseases. By enrolling in CoRDS, patients who qualify will be notified of any opportunities to participate in clinical trials and other research opportunities. Please take the time to open this link to register your rare disease. CORDS Registry Partnership, Link to the Brochure
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 aims of the UK Vasculitis Trust are: To support those suffering from vasculitis diseases and their families by providing information and advice. To inform and educate those with vasculitis about their illness so that they are empowered to take greater control of it. To work with other organizations and medical professionals to improve the recognition, diagnosis, and treatment of vasculitis diseases. To raise awareness of vasculitis disease among medical professions and the general population. To enable vasculitis sufferers to contact others with vasculitis. To encourage and support the formation and development of local vasculitis support groups. To support research into the causes and effects of vasculitis and into improvements in the diagnosis of vasculitis and treatment of people suffering from different types of vasculitis.
Lee Altenberg is a scientist who was also a caregiver to his father who had cryoglobulinemia. Altenberg’s website is frequently cited as the go-to resource on cryoglobulinemia testing. His research investigates the theoretical foundations of evolutionary dynamics, evolutionary computation, and their related mathematics. His focus is on higher order phenomena — the evolution of evolvability, robustness, modularity, phase transitions, genetic systems, and the genotype-phenotype map. In pursuit of these areas, he has contributed to the spectral theory of linear operators. His work employs mathematical and numerical analysis and computational experiments.
Eileen M. Propp, Ph.D. is the founder of Propp Solutions and co-founder of Alliance for Cryo. Propp is an organizational psychologist who focuses on disability, e-patient, healthcare access and organizational culture and change. Propp was also an E-patient scholar 2013 for the prestigious Stanford MedX Conference – Engagement and Producer Track. Propp is the subject of a documentary called Living with Cryo produced by Matt Hanlon of www.thoughtfulduck.com; artwork by Amy O’Hanlon. Propp coordinated and sponsored the following unique videos for awareness and education. Cryoglobulinemia Explained – featuring Dr. Paul Monach, Cryo Simulation – Art stop motion by Amy O’Hanlon show how cryoglobulins precipitate in a blood vessel. Be-Rare: A Cryo PSA. 8 people with cryo.
Matt Hanlon produced Cryoglobulinemiaoglobulineia Awareness. www.thoughtfulduck.com
Amy O’Hanlon made video art and other medical art. http://aeohanlon.carbonmade.com
,contributed music to videos. firstname.lastname@example.org
We thank all for sharing their experiences, resources, and support.