Idiopathic Pulmonary Fibrosis is a rare pulmonary disorder characterized by scarring of the lungs.
Hi everyone, I'm a volunteer with RareShare and Rare Genomics, and I'm hosting a podcast in a couple of weeks where I'll be interviewing a Pulmonary Fibrosis expert (Dr David Lederer), along with a patient. If anyone has any specific questions they would like me to ask the expert or the patient, please post them here by April 15.
Thanks so much,
The Pulmonary Fibrosis Research Enhancement Act (PFREA) has been re-introduced in Congress! This landmark bill, reintroduced on February 13th, establishes a national patient registry, calls for a national oversight program and efforts to increase public awareness of PF! Please note: the bill number has changed from the previous Congress. The NEW bill number is H.R. 1079. Tell your friends and family to call, email or write their congressman. Visit the Coalition for Pulminary Fibrosis website for an easy webform that will send an email for you (for free of course). http://www.coalitionforpf.org/cpf_join.php
Publication date: 8 Jun 2019
Community: Idiopathic Pulmonary Fibrosis
Hear about rare disease diagnosis, treatment, and quality of life from the perspective of Pulmonary Fibrosis patient Jim Carns, his wife and caregiver Karen Carns, and Dr David Lederer, an expert from the Pulmonary Fibrosis Foundation who is also an Associate Professor at Columbia University. Jim tells us his diagnosis and treatment story, Karen explains what life is like as a caregiver or “care partner,” while Dr Lederer explains the causes of the disease, the treatment options, and upcoming Pulmonary Fibrosis research.
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.
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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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