For Patient Advocacy Groups

Give Your Organization a Global Identity

Register on RareConnect and receive a universal identifier that connects your organization to patients, researchers, and partners worldwide.

The Problem We're Solving

Patient advocacy groups are scattered across dozens of registries, each with different formats and identifiers.

50+

Different registries list PAGs with no common identifier

30%

Of PAG entries are duplicates across databases

Standard way to link a PAG across systems—until now

Every organization on RareConnect receives a permanent, globally unique identifier in the RDCP:PAG format—like a DOI for patient organizations.

RDCP:PAG0000001

Join a growing network of patient organizations building the future of rare disease support together.

Patients and caregivers worldwide can find your organization when searching for support related to specific diseases.

Your RDCP identifier works across registries, research networks, and health platforms—no more duplicate entries.

Connect directly with patients and families affected by the conditions your organization serves.

Be visible to researchers and clinical trial coordinators looking to partner with patient communities.

Your organization is automatically linked to relevant diseases in our MONDO-powered database of 26,000+ conditions.

Verification badges show patients that your organization is legitimate and actively managed.

Getting your RDCP identifier is simple and free.

Create a new listing or claim an existing one imported from public registries like Orphanet or NORD.

Complete our verification process to prove you represent the organization. This builds trust with patients.

Get your permanent, globally unique identifier that follows your organization everywhere.

Join the growing registry of patient advocacy groups building a connected rare disease ecosystem.