The Kith Collective

We are incredibly proud to share this new resource - the Guide to Patient Involvement in Rare Disease Therapy Development. Download the Guide and learn more: https://bit.ly/3qVRJAK.

Together with leadership from the EveryLife Foundation for Rare Diseases and in partnership with Biotechnology Innovation Organization - BIO, National Health Council, and PhRMA, we developed this over the past year+ with over 100 community leaders.

Filled with action steps and relevant resources, the Guide is designed for you, whether you are a patient advocacy organization, industry partner, payer, or another critical player in rare disease medical product development.

So far 4,368 people affected by depression and/or bipolar have shared wrenching accounts of challenges they experience and their hopes for wellness and research aligned with their priorities. We are proud to be working with the Milken Institute Center for Strategic Philanthropy and the Depression and Bipolar Support Alliance to bring forward the voices of people with lived experience. For a summary of interim results, please visit: https://prn.to/2QxRecf To take the survey, click here: https://lnkd.in/gKHFy6M

Tomorrow, the AWAKE Sleep Apnea meeting -- the first patient-focused medical product development meeting -- will take place in College Park, Maryland. Staff from the FDA's Center for Devices and Radiological Health and Center for Drug Evaluation and Research will hear from hundreds of patients about what it's like to live with sleep apnea and barriers they face in getting effective treatment. They'll also learn from results of a survey that has so far attracted more than 5,000 responses. Join us by webcast or complete the survey. More details at: https://www.awakesleepapnea.org/

The Kith Collective is proud to have been part of this effort from the beginning!