The announcement was made at the European Respiratory Society’s International Congress (ERS 2017) in Milan, Italy.
“IPF is a challenging and unpredictable disease, and not knowing how or why it occurs can delay treatment and support for patients,” Harold P. Wimmer, national president and CEO of the American Lung Association, said in a press release. “There are not enough resources nor attention dedicated to IPF.
“We intend to create a hub of information and a supportive community to raise awareness and to advocate for and improve the quality of life for patients and caregivers affected by this destructive, incurable lung disease,” he said.
The two organizations aim to accelerate the development of resources for those living with IPF, their families, and healthcare providers. They will build an online platform with resources and support for people to help them through their journey with IPF. The new website will provide information on symptoms and diagnosis, treatment options, clinical trials, patient resources, and ways to improve their daily quality of life.
The partnership includes another initiative besides the online platform: Wimmer will represent the American Lung Association on the panel of judges for Three Lakes Partners’ IPF Catalyst Challenge, which will award a total of $1 million for up to three leading ideas to improve quality of life for IPF patients and their caregivers. Everyone, including patients, innovators, entrepreneurs, healthcare specialists, and scientific researchers, is encouraged to submit their big idea.
“When I was diagnosed with IPF, I was told that I should get my affairs in order because I had two to three years left,” Bill Vick, 74, recalled. “There was no follow-up information, and when I tried to do my own research, it was an information desert.
“The problem is that there is so much complex and convoluted information about IPF. Despite the dim prognosis my doctor gave me, I’ve been living with this incurable disease for six years since being diagnosed and most likely 10 years prior to my diagnosis,” Vick added.
There is still no cure for IPF, but there are ways to slow the course of the disease, relieve symptoms, and help patients stay active and healthy. The American Lung Association offers online, in-person and telephone specialized medical support through its toll-free Lung HelpLine (1-800-586-4872), its community-based Better Breathers Clubs, and the online Living with Pulmonary Fibrosis and Caring for Pulmonary Fibrosis social support communities.
“Unfortunately for patients, IPF remains a disease that receives little attention, resulting in a lack of innovative solutions, research, and patient resources that are desperately needed,” said Elizabeth Estes, Three Lakes Partners’ chief marketing officer. “Collaboration is at the heart of our mission, and we will be working closely with the American Lung Association and others to bring much-needed resources and increase awareness of this devastating disease.”