Adira Foundation’s 2020 programs are based on three interwoven priorities:

Click the headings below to learn more.

Patient interviews

Adira is talking to people with neurodegenerative diseases to hear not only what living with their diagnosis is like from their perspective, but also who they are as people. We will help them share their stories with audio and video as possible to help change the narrative around neurodegenerative disease.

Small groups

Adira has begun visiting support groups and other gatherings to hear from the point of view of patients, their families and caregivers about their experiences and unmet needs. This presents small, familiar settings from which patients can share their stories.

convening-table
People living with one of the five target diseases or their caregivers will make up more than half of attendees.

Larger, regional convenings

Adira will convene a wide range of stakeholders regionally, in a neutral space, to have open and honest conversations, and commit to an objective approach not aligned with any one industry or perspective.

People living with one of the five target diseases or their caregivers will make up more than half of attendees. Other participants will include representatives from patient-focused organizations, public and private payers, life sciences, research institutions, clinicians, and hospitals, among others.

Adira Foundation knows that phenomenal organizations provide critical services to people living with neurodegenerative diseases. Adira plans to enhance that work in 2020 through small grants to charitable nonprofits.

In response to the urgent needs this community is facing as a result of the coronavirus, we decided to start with a Fast-Track Grants program.

Learn more about our grants program here. >>

Adira will invest in several internal flagship projects in 2020—these are evolving and changing in response to COVID-19’s impact. A sampling:

INTERACTIVE NETWORK MAP

network-mapBy mapping the organizations and services across the five diseases, a visual analysis tool we might identify trends, such as joint efforts to echo and enhance.

SHARED VIRTUAL HUB

Adira is gathering partners to help create an online space where everyone within our five neurodegenerative disease communities can network and share resources, communication and tools for helping people with ND thrive.

CONVENING IN A POST-CORONAVIRUS WORLD

What it means to convene is changing rapidly and Adira will examine ways we can safely bring together representatives from all five communities to create opportunities to share best practices, hear about innovative services, and create connections. We’re actively working to move a support group listening project online and to virtually convene representatives from organizations with programming for people with neurodegenerative diseases.