KD Voices

Partnering With the Kennedy's Disease Community to Find a Cure

Bringing the Voices, Lived Experiences, and Priorities of the Kennedy’s Disease Community to the Forefront

The Kennedy’s Disease Association (KDA) has formed KD Voices, a global coalition of patients and care partners who are willing to share their lived experiences and perspectives with pharmaceutical and biotechnology companies, researchers, and other organizations working to develop therapies for Kennedy’s Disease.

Our goal is to ensure the KD community has a meaningful voice in research and clinical development.

Why KD Voices?

Developing a Treatment for Kennedy's Disease is a Complex Process

A clinical trial requires not only rigorous research and scientific expertise, but also an understanding of the people who will ultimately use and live with the therapies being developed. People affected by Kennedy’s Disease have a unique and valuable perspective and can help shape research and therapy development by sharing their priorities, concerns, challenges, and any unmet needs. 

KD Voices volunteers will help ensure that the needs and priorities of the KD community are considered throughout the research and clinical development process, and help accelerate the development of effective therapies for Kennedy’s Disease.

How KD Voices Works

Your Voice Matters

KD Voices will bring together approximately 15–20 volunteers who reflect the diversity of the Kennedy’s Disease community. Volunteers may include people living with Kennedy’s Disease and care partners. Volunteers may come from different countries and bring a wide range of lived experiences, perspectives, stages of disease progression, and caregiving responsibilities. By bringing together a diverse group, KD Voices can help provide a more complete picture of the realities of living with and caring for someone with Kennedy’s Disease. 

Who Can Participate?

KD Voices Begins in the U.S. and Canada, With the Global Kennedy’s Disease Community to Follow

Volunteers must meet the following program requirements:

• KD community members who join KD Voices must be willing to participate in KD Voices for a three-year term. 
• Be willing to make themselves available for consultation with the KDA and various pharmaceutical and biotechnology companies as opportunities arise. 
• Be able to communicate effectively in English.
• Be willing to share their lived experience and perspectives constructively.
• Be willing to participate as part of a diverse group of patients and care partners.
• Attend required annual training sessions.
• Sign a commitment letter outlining the expectations of participation.
• Sign non-disclosure agreements (NDAs) when required for specific engagements.

Participation in KD Voices is not a requirement to participate in a clinical trial and does not guarantee that a volunteer will be eligible for or offered participation in a clinical trial.

KD Voices participants are volunteers. The KDA encourages companies who engage with volunteers to be compensated for their time and any travel and related expenses as appropriate.

How Are KD Voices Volunteers Selected?

The Goal of KD Voices is to Provide Patient Perspectives to Companies Interested in Developing Therapies for Kennedy’s Disease

The KDA is seeking a diverse group of volunteers who collectively represent the breadth of experiences within the Kennedy’s Disease community. Participant volunteers will be selected to demonstrate the variety of manifestations of Kennedy's Disease in patients with established symptoms as well as the varying (and typically increasing) burden of care for partners and family members.

Selection will consider factors such as:

• Experience living with Kennedy’s Disease
• Caregiving experience
• Diversity of disease characteristics and experiences
• Experience with medical research or clinical trials
• Previous involvement in patient advocacy or advisory activities
• Communication and listening skills
• Ability to participate constructively in a group setting
• Availability and willingness to fulfill the three-year commitment

The Selection Process

STEP 1. Complete the KD Voices Questionnaire: Interested individuals will complete a short KD Voices Volunteer Interest Questionnaire.

STEP 2. Participate in an Interview: Applicants who are being considered may be invited to participate in an interview with members of the KDA Board of Directors.

STEP 3. Selection: The KDA Board of Directors will select approximately 15-20 volunteers who collectively provide a diverse representation of the KD community.

STEP 4. Commitment: Selected volunteers will be asked to sign a commitment letter outlining the terms and expectations of participation.

STEP 5. KD Voices Training: Selected volunteers will participate in KD Voices training.

KD Voices Volunteer Training

Committed to Ensuring Participants are Prepared to Engage Confidently and Constructively

The KDA Board of Directors will provide oversight and direction to the selection of volunteers, annual training, and interactions with industry. Participants will receive annual training provided by the KDA, which may take place in person or virtually.

Training may include:

1. The Current State of Kennedy’s Disease Research
2. Ongoing and Upcoming Clinical Trials
3. The Clinical Trial Process
4. Regulatory Updates
5. Emerging Therapeutic Approaches
6. Patient Engagement and Advisory Processes
7. Presentations and Discussions with Researchers

Participants are expected to develop a basic understanding of research and clinical development and to be willing to listen to and communicate constructively with patients, care partners, healthcare professionals, researchers, and industry representatives.