NORD — Patient Organizations directory & Breakthrough Summit
Organization directory / rare disease conference
NORD’s patient-organization directory can help advocates identify condition-specific organizations and resources. Assess each organization’s scope and eligibility. The directory represents organizations, not a roster of available independent patient advocates.
Organization superpower
Finding condition-specific rare-disease organizations
Why consider this organization?
Use the directory to research relevant support organizations and possible referral resources. Assess each organization's scope and eligibility; these are organization listings, not available independent advocates.
Current enrollment or membership is not confirmed. Check dates, cost and eligibility with the provider before deciding.
Related next step: explore community resources
- Audience
- Adjacent — community leaders, not directory of independent paid advocates
- Geography & format
- US — Washington, DC
- Credential
Rare-disease patient-organization membership and directory participation, not individual professional certification or BCPA.
Credential source (opens in a new tab) · Checked November 14, 2026
- Financial navigation
- Review curriculum for claims, billing, insurance and assistance coverage. Confirm with provider.
- Membership cost
- Organization — revenue below $25,000$50.00 / year
- Revenue $25,001–$50,000$75.00 / year
- Revenue $50,001–$100,000$150.00 / year
- Revenue $100,001–$250,000$200.00 / year
- Revenue $250,001–$500,000$300.00 / year
- Revenue $500,001–$750,000$400.00 / year
- Revenue $750,001–$1M$500.00 / year
- Revenue $1,000,001–$2M$700.00 / year
- Revenue above $2,000,001$900.00 / year
Organization membership, not an independent-advocate credential. Revenue-band boundaries reproduce the application wording; ask NORD about exact boundary amounts. Conference registration is separate.
Membership source (opens in a new tab) · Checked November 14, 2026
- Last checked
- Imported from prior research October 29, 2026; not freshly verified