As I find helpful resources, I’ll add them here. If you have any you’d like to add, please include them in a comment. Thanks!
Cleveland Clinic Excellent overall resource for disease info, doctor chats, lifestyle, wellness, newsletters, research, clinical trails, etc.
Mayo Clinic Another great resource. Also includes a symptom checker, expert blogs, and extensive information about nutritional supplements.
TREATMENT CENTERS & CLINICAL TRIAL INFO:
IPFnet.org A network of research centers dedicated to the study of idiopathic pulmonary fibrosis (IPF). Includes a list of Medical Centers of Excellence across the US that excel in the treatment of IPF. Also lists clinical trials being conducted by the network.
ClinicalTrials.gov A registry and results database of federally and privately funded clinical trials taking place across the US and around the world. Searchable by both disease/condition and location.
PulmonaryFibrosis.org The Pulmonary Fibrosis Foundation actively supports research into IPF and offers a wide variety of resources for patients and families, including: webinars, online supports groups, local support groups across the country, a quarterly newsletter, as well as information about treatment, lung transplantation, and more. Find them on Facebook here.
Coalition For Pulmonary Fibrosis This group also supports research, education and advocacy, and provides support for patients and caregivers.
Patients Like Me A community site that allows patients to connect with each other based on disease state or symptoms. PLM includes forums for sharing experiences, a health tracker and lots of educational resources. PLM recently launched its “Open Research Exchange”, which pairs researchers with members for more comprehensive study of particular diseases, symptoms and treatments.
Facebook offers several excellent support groups: Pulmonary Fibrosis Awareness (partnered with the PF Foundation), and the Pulmonary Fibrosis Spread Awareness Group are two. Search Pulmonary Fibrosis and you will find several more. The community is caring, supportive, and dedicated to sharing information, experiences, news and encouragement.
Paula Antonini, Certified Nutrition Coach Good nutrition is a cornerstone of living a healthy lifestyle and an essential factor in the long-term treatment of a disease like IPF. Paula is an excellent coach, warm, supportive and incredibly knowledgeable.