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Externally-Led PFDD Meeting for the IH Community
The Illuminate Hypersomnia initiative will bring together members of the global IH community to shine a light on all the ways that IH affects daily life.
BioNJ MBA Business Plan Competition
Competition to identify innovative approaches to strengthening diversity within clinical trials
Cure Sanfilippo Foundation - Leveraging Data Workshop
Workshop to address the sharing of existing data sets to further development of therapies for Sanfilippo Syndrome
CTX EL-PFDD Meeting
Members of the global CTX community joined together for the first time to describe the effects of CTX on their lives, the burdens of the disease and its treatment, and unmet needs.
Guide to Patient Involvement in Rare Disease Therapy Development
This Guide, the product of a year-long compendium workshop series, is a resource for all who are interested in more confident involvement of patients and caregivers in therapy development.
EveryLife ICD Code Roadmap
This suite of resources from the EveryLife Foundation - a detailed guide, short video, readiness assessment tool, case studies, and FAQs - serves as a roadmap towards better understand how diagnosis codes are assigned, updated and revised.
NEA 2025 Strategic Plan
NEA announces a new strategic plan to guide the organization (and the eczema community). The plan casts a bold vision for action and impact that will reach every one of the 31 million Americans living with eczema. The Kith Collective provided strategic counsel and support.
Announcing a Global Alliance of Organizations Serving Two Rare Brain Diseases
Leaders of 12 non-governmental organizations (NGOs) focused on the rare neurological disease Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) announced formation of a global alliance PROMOTUS. Kith Collective founder Kim McCleary facilitated the June 2019 meeting of these global leaders to help them identify shared goals and potential benefits of joining efforts. She helped prioritize action steps that led to the April 2020 announcement.
More Than Skin Deep Voice of the Patient Report
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.
Parent Project Muscular Dystrophy Breaks New Ground with Compass Meeting
“The Duchenne Patient-Focused Compass” meeting was comprised of panels of Duchenne community members (patients and caregivers) to explore ‘living with Duchenne’, clinical trial and therapeutic experiences, and access to approved therapies, across the Duchenne spectrum. The report, authored by Kim McCleary, documents the compelling testimony, the community's unmet needs, and patient-focused policy agenda to advance care and cures.
Biogen Hosts Roundtable to Gather Input on Patient-Focused Drug Development
In conjunction with events marking the company's 40th anniversary, Biogen executives met with seven progressive patient advocacy leaders to strengthen their approach to integrating patient perspectives earlier and more consistently throughout the R&D process and across the lifecycle of innovative medicines.