We believe that those who are most affected by ALD should have a significant say in the decisions and initiatives that influence their care and quality of life.
Our goals are to:
- Amplify Patient and Caregiver Voices: Ensure that the perspectives of those living with ALD are integral to our strategic decisions and actions.
- Empower Community Involvement: Provide meaningful opportunities for patients and caregivers to volunteer their time and talents, contributing to initiatives that matter most to them.
- Shape ALD Connect’s Future: Collaborate on the development and execution of programs and projects that directly address the needs of the ALD community.
The Patient-Led Planning Committee meets once a month to discuss ongoing projects, collect feedback from the ALD community, and plan future initiatives. These meetings are a space for open dialogue, where all voices are valued, and everyone has the opportunity to contribute.
Each member brings a unique perspective to the table. Whether it’s shaping new programs, refining existing ones, or setting priorities for the organization, the committee plays a key role in guiding ALD Connect’s strategic direction.
Members of the committee are encouraged to volunteer their time and skills to support various initiatives. This could involve anything from helping to organize events, participating in outreach efforts, or contributing to educational content. By leveraging the willingness of our community to give back, we create a stronger, more impactful organization.
