NORD Patient Advocacy Organizations Network
We invite you to join more than 330 organizations in helping people with rare diseases live better and fuller lives. This powerful network epitomizes the NORD slogan: Alone we are rare. Together we are strong.
Our Membership Makeup
We are a diverse network, representing hundreds of diseases and varying in size. Together, our members are in touch with more than half a million rare disease patients.
Here are some facts from a survey of our network 5 years ago:
- Nearly 6% of our organizations have over 40 years of experience
- 71% still have their original founders involved in the governance
- About 81% have less than 5 full-time employees; the majority are run with no full-time employees
- 95% of organizations said they are largely funded by individual donors
- 21% operate with a budget of less than $25,000 and 46% less than $200,000
How We Help
Our programs are designed to strengthen organizations and increase your ability to serve your patients and families, educate medical professionals, and bring awareness to the general public. Our focus is education and capacity-building.
We offer strategic guidance in areas such as:
- Virtual events, conferences, and fundraising
- Website content
- Social media marketing
- Events fundraising
- Grant research and writing
- Board governance and expectations
- Financial and legal filings
- Patient and caregiver resources
- Physician resources
Access to Capacity-Building and Leadership Resources
We offer toolkits, articles, workshops, and webinars on best practices from across the community. While some of these resources are free, the full range is only available to NORD network members.
We offer 2 levels of membership:
- Platinum Level represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries. Click here for membership criteria and services.
- Gold Level allows patient advocacy organizations to access our community, resources, and services. It is available for 501(c)3 tax-exempt organizations that are NOT currently engaged in medical education, research funding, RFP review, registry coordination, or any work involving a Medical Advisory Board. Click here for membership criteria and services.
If you are not currently a member, view the benefits.
We host webinars on important topics every month, bringing in expert speakers and fellow rare disease executive directors. Here is a sample of past topics:
- Grow and Diversify Your Board: When, Why, and How
- Fundraising 101: A Panel of Your Peers
- Social Media 101
- Continuing Medical Education 101 (CME)
- Federal Policy Updates
We can help promote your work and services through our communications channels. You can become a guest blogger on our blog and promote your upcoming events and campaigns on our social media sites. We share information on: