Von Willebrand Disease is a type of hemophilia.
My name is A'Brianna Morgan; Recruiting Associate with Design Science. We're a consulting firm that is currently conducting an observational research project on behalf of a medical product manufacturer. Our goal is to help the Von Willebrand Disease community by discovering "facts on the ground" and gaining a deeper understanding of the viewpoints of VWD patients, caregivers, and healthcare providers. This observational study will support the development of new drugs, healthcare provider and patient education, training and support services that will better serve the VWD community, so we'd like to partner with vWD patients and caregivers, HTC and Home Infusion Nurses, Pharmacists, & Emergency HCP's. We want to learn what medications, supplies, training materials, etc. people use, how they use them, and why they use them that way. Design Science will be offering an honorarium to each participant, based on the amount of time needed from each individual. Would you be willing to disseminate the attached information to patients or caregivers affected by vWD? Or perhaps you have colleagues who often work with vWD patients? We would like to connect with them as well for this project. Thanks in advance. Please let me know if you have any questions. -- A'Brianna Morgan Recruiting Associate Design Science 924 Cherry Street, Fifth Floor Philadelphia, PA 19107 Tel: 215.627.4122 Fax: 215.933.5622 dscience.com Fitting products to people. ****************************** This message and any attachment hereto, is intended only for use by the addressee(s) named above and may contain legally privileged and/or confidential information. If you receive this email in error please immediately notify me by return electronic mail and permanently delete this email and any attachment hereto, any copy of this e-mail and of any attachment, and any printout thereof.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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