Resources for Researchers and Clinicians
ASPHO
ASPHO offers a forum for the exchange of ideas on issues of special interests and concern to people in the specialty, as well as a means for facilitating communication among members. ASPHO is the only professional organization dedicated solely to the professional development and interest of subspecialists in pediatric hematology/oncology.
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CANVAS
The Consortium of iNvestigators of Vascular AnomalieS (CaNVAS) is a multi-institutional research consortium founded by a group of pediatric hematologist/oncologists and patient advocacy groups to address the rare nature of vascular anomalies. The need for this consortium stems from the paucity of prospective multicentered research in this field, particularly as it relates to novel therapies and outcome studies.
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ClinicalTrials.gov
ClinicalTrials.gov is a place to learn about clinical studies from around the world.
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EveryLife Foundation
The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.
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GoodRx
Our mission is to build better ways for people to find the right care at the best price. Our technology gives all Americans — regardless of income or insurance status — the knowledge, choice, and care they need to stay healthy.
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HealthCare.gov
Visit HealthCare.gov to learn about your options to get health insurance coverage, check if you qualify for savings, and compare plans.
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ISSVA
ISSVA is a multidisciplinary international society of physicians, scientists, and health care providers united by an interest in vascular anomalies. The Society aims to promote the highest standards of care for patients with vascular anomalies by advancing clinical and scientific knowledge concerning causes, diagnosis and treatment, and by education of physicians, health care providers, patients and the community. The Society encourages the free flow of information between its members and interested groups, through workshop meetings and teaching programs, and by the dissemination of a classification scheme and pertinent scientific data.
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JOVA
The Journal of Vascular Anomalies (JOVA), official journal of the International Society for the Study of Vascular Anomalies (ISSVA), is an international, peer-reviewed, open access journal dedicated to the discovery and report of the scientific investigation, diagnosis, and treatment of congenital and acquired human vascular lesions.
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LGDA Complex Lymphatic Anomalies
LGDA ensures patients with complex lymphatic anomalies (CLAs) have the comprehensive support they need from peer, medical, and scientific communities to lead longer, higher-quality lives.
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NAVBO
Since 1994, the North American Vascular Biology Organization (NAVBO) has provided a forum for vascular biologists who are either in the traditional basic science disciplines (structural/molecular biology, cell biology, physiology) or studying the pathogenesis and treatment of human disease in disciplines such as medicine, pathology, surgery. NAVBO's membership is a mixture of scientists with different backgrounds and thus inherently different viewpoints on the same scientific problems. This makes for lively discussions and mutual education at our meetings and workshops. NAVBO provides the opportunity to communicate with a cross-section of colleagues enhancing this discovery process, which will facilitate rapid translation into practical remedies.
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NORD
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
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Patient Advocate Foundation (PAF)
We provide patient services, eliminating obstacles in access to quality healthcare.
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Radiology Info for Patients
RadiologyInfo™ is dedicated to being the trusted source of information for patients, families and health care providers about the vital role of medical imaging, image-guided therapy and radiation therapy in health care.
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RDCRN Resources for Patients and Families
The Rare Diseases Clinical Research Network (RDCRN) provides numerous resources for researchers and clinicians.
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Rights of Students with Disabilities
A resource to for the rights of students with disabilities. Find information on the IDEA, Section 504, and the ADA.
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VAccess
Through VAccess, patients and families can find educational resources to better understand vascular anomalies or find expert care, while clinicians can explore clinical resources or submit direct inquiries to our network of VA specialists. Click below to access the information and tools made for you.
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VASCERN
VASCERN, the European Reference Network (ERN) for Rare Multisystemic Vascular Diseases, was established in 2017 to improve the lives of patients across Europe who suffer from rare vascular diseases. The network brings together highly specialized healthcare providers, multidisciplinary teams, patients, and the scientific community to address the challenges associated with these conditions.
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