Understanding the Lived Experience of Eczema
For the first time ever, adults and children living with eczema and their family members shared riveting descriptions of symptom burdens, challenges managing the disease, and treatment expectations with FDA regulators, drug developers, and researchers. This comprehensive, full-color report shares testimony, data, and photos from the 160 in-person participants, 1,508 respondents to the companion survey, and thousands of virtual attendees participating via webcast.
Taking Stock of PFDD: Envisioning a Vibrant Future for Patient-Focused Drug Development
PFDDworks, a collaborative forum convened by the Kith Collective and Faegre Drinker for patient advocacy leaders to share learnings and advance understanding of patient-focused medical product development, authored an article published in the Food and Drug Law Institute (FDLI) Update Magazine. This article examines the impacts of PFDD and makes recommendations for the future of the initiative.
New year, new math at the Kith Collective
The dawn of each new year often brings growth, and at the Kith Collective, we are ringing in 2020 by growing our team! Sam Mayberry joins the Kith Collective where she will support client work and project management. Sam and Kim formerly worked together at FasterCures where Sam was the mastermind behind the annual Partnering for Cures events and played a key role in the Patients Count program. More recently, Sam led the patient-facing portfolio at the National Osteoporosis Foundation.
Expanding Patient-Focused Medical Product Development to Leverage Caregivers' Insights
"Paving the Path for Family-Centered Design" explores the vital roles that family caregivers can play in shaping biomedical research and development, regulatory decision-making, and healthcare delivery. This first-of-its-kind report, authored by Kith Collective founder, Kim McCleary, addresses opportunities to incorporate the critical knowledge of caregivers in developing pharmaceutical products, biologic therapies, diagnostics, and medical devices.
Pink Sheet Reports on DBSA's "Well Beyond Blue" Meeting
"The Nov. 16 PFDD meeting [was] a structured way to make sure there is a fresh record of the patient voice during the ongoing review of new treatment approaches. The Depression and Bipolar Support Alliance worked with the Milken Institute in August and September to conduct a patient survey in anticipation of the meeting. During the PFDD meeting, patients aired grievances about the “throw things against the wall” approach to selecting treatments, as well as the side effects that accompany them."
First-ever Patient-Focused Medical Product Development Meeting Report Issued
"Raising Voices for Progress in Treatment and Care" is based on first-person accounts conveyed at the June 8, 2018 AWAKE Sleep Apnea patient-focused medical product development meeting attended by 465 people (in person and by live webcast) and a Patient & Caregiver Survey that attracted responses from 5,630 adults of all ages from around the country.