What’s your definition of a patient organization?
A patient organization is any structured group that represents, supports, or advocates for patients and/or caregivers, or provides patient-focused education, resources, or community empowerment, serving a specific disease, condition, care pathway, or defined patient population.
This includes, but is not limited to, charities and non-profits, patient advocacy groups, disease foundations, caregiver organizations, umbrella networks, and structured patient-led communities.
What countries are included in your platform?
Patient organizations from more than 200 countries are included in the platform.
What indications and therapeutic areas are included in your platform?
More than 29 000+ indications and conditions are covered in the platform.
What types of patient organizations do you have?
We have established and defined five different types of patient organizations:
1. Umbrella:
An organization that brings together multiple independent patient organizations under a shared disease area, theme, or mission, primarily for coordination, advocacy, or representation.
2. Parent: A primary patient organization that establishes, governs, or oversees one or more affiliated organizations operating under its brand, structure, or guidance.
3. Affiliate: A patient organization that is formally connected to and recognized by a parent organization, typically operating at a national, regional, or local level.
4. Independent: A standalone patient organization that operates autonomously, without formal governance, ownership, or structural ties to another patient organization.
5. Alliance:
A collaborative network that includes independent patient organizations, without a single governing parent or centralized authority.
What data sources do you use to map and evaluate patient organisations?
We are using a wide array of sources, including, but not limited to:
Websites
Social media
Charity registries
Patient registries
Company directories
Umbrella organizations
Parent organizations
Aggregated repositories
Local Business registries
Industry payment disclosures
Lobbying data
Tax filings
Regulatory review boards
How often is your data updated and refreshed?
The data is constantly refreshed – i.e. hourly, daily or weekly depending on data source and data availability. Copilot responses are always done using the latest available data.
What should I do if I can't find a Patient Organization?
Please message our support team in the app, or reach out to support@axcela.bio.
How do I export data?
We have developed a REST API which enables you to extract key data on POs from your searches, from your lists and more. Contact support@axcela.bio for more information about our API.
Can I integrate the data into our existing systems and platforms?
Yes, we have designed the platform for seamless integration through a REST API. Contact support@axcela.bio for more information about our API.