We have exciting news! This past January, the Foundation to Fight H-ABC joined the National Organization for Rare Disorders as a Platinum NORD member organization.
What Is the National Organization for Rare Disorders?
The National Organization for Rare Disorders (commonly referred to as NORD) is a nonprofit patient advocacy organization dedicated to those with rare diseases and the organizations that serve them.
For more than 30 years, the organization has worked to raise awareness of various rare diseases, drive supportive policies, advance medical research, and provide resources to those who need them.
NORD’s ultimate goal is to improve the lives of individuals and families affected by rare diseases. In addition to offering educational materials, patient assistance, research support, and advocacy, NORD provides mentorship for disease-specific patient organizations, such as the Foundation to Fight H-ABC.
What Are the Criteria for Becoming a Platinum NORD Member Organization?
To become a Platinum NORD member organization, a disease-specific patient organization must have the following:
A mission and programs that align with NORD’s goal of being patient-centered
Proof of tax-exempt status
Dated bylaws showing mission and programs align with NORD’s goal of being patient-centered
Bylaws detailing the process for board member elections, term limits, etc.
Programs that engage patients, caregivers, families, medical professionals, and supporters
An up-to-date website reflecting the mission and patient voices
At least 5 board members that meet at least twice annually
At least 3 medical and/or scientific advisors, as well as a policy and procedures for expectations and management of the advisory board
Thoroughly reviewed and accurate medical information
A conflict-of-interest policy for board members and staff
A board-approved annual operating budget
A privacy policy that protects patients’ and family members’ identities
A full disclosure of how donations are used
After the Foundation to Fight H-ABC was found to meet the above criteria, our organization was accepted as a Platinum NORD member organization.
What Does This Mean for the Foundation to Fight H-ABC?
As a Platinum NORD member organization, we’ll be able to receive guidance and support to grow our organization and spread awareness of H-ABC.
With this new partnership, we’ll have the chance to network with peers, collaborate with NORD to advocate on behalf of those affected by H-ABC, receive access to breaking news related to the rare disease community, gain insight into the policy process, and promote our cause to NORD’s extensive network.
In short, joining NORD will help further our efforts in giving children with H-ABC a fighting chance.
Additionally, being a Platinum NORD member organization allows us to support Rare Disease Day (February 29) in an official capacity. To learn more about this event, click HERE .
The Foundation to Fight H-ABC is grateful to be a part of this organization, and we’re looking forward to the opportunities the partnership will provide. For additional information about the National Organization for Rare Disorders, please visit their website at www.rarediseases.org.