Press Releases

Global Genes’ RARE Concierge Program and Child Neurology Foundation Partner to Provide Expanded Support and Connection for Rare Disease Patients and Advocates

June 8, 2023

The NSSN was launched by CNF in 2022 to help patient advocacy organizations refer families to local service organizations to address social determinants of health. Service referrals for families include access to food shelves, transportation assistance, and housing assistance. The program also tracks the outcomes of those referrals, measures the impact of organizational programs, and collaboratively aggregates data about how patient advocacy organizations are making an impact.  

“We’ve heard directly from families in our network that they are struggling to find resources that are available to them,” said CNF Executive Director and CEO, Amy Brin. “We’re thrilled to have Global Genes RARE Concierge Program join the Neurology Social Services Network. This partnership will help those families living with a neurologic disorder by providing them information, expanded access to trusted resources, and guidance in navigating their unique rare disease journey.”  

Global Genes’ RARE Concierge program is a Patient Support Service that serves as an entry point for patients, caregivers/care partners, patient advocates, and other rare disease stakeholders worldwide, regardless of where they are in the diagnostic odyssey and wherever they fall on the patient and advocate continuum. RARE Concierge is an epicenter of information, resources, support, and connections for the rare disease community. For many individuals, RARE Concierge is their first meaningful engagement with the global rare disease community. 

“This partnership will allow us to expand our referral network to better serve patients and caregivers who contact Global Genes and are seeking support through all facets of the rare disease experience, including medical, financial, and social support.” shared Maria Della Rocca, Sr. Director of Support and Education Programs at Global Genes. “Given that almost 50% of the inquiries we receive through RARE Concierge are about neurological conditions, we are thrilled to be working more closely with a leader in the space like Child Neurology Foundation to ensure we’re providing the best information and support to individuals when they need it most.”

Partnerships and collaborations with organizations like CNF are important, as they address health equity needs, one of Global Genes’ strategic focus areas. Together both organizations will be able to better identify unmet needs within underserved communities and increase access to resources within regions that are currently considered care deserts. We also aim to:  

  • Increase the number of families served by the NSSN and connect them to local resources. Given the large number of inquiries received by RARE Concierge for neurological conditions, collaborating with leaders in the neurological disease space like CNF to provide relevant resources to these individuals is highly relevant and timely. 
  • Expand our repository of referred services for those utilizing RARE Concierge services each year. RARE Concierge is able to provide information, resources, and connection to the individuals contacting us by maintaining an up-to-date database. This partnership will aid in the expansion of our existing database by increasing our partner organization network for referring families. 
  • Enhance our understanding of unmet needs based on geographical location. Global Genes collaboration as a partner in CNF’s NSSN program will help us address health access and equity issues from socially vulnerable communities across the country that are impacted by neurological conditions. 

For more information about the partnership with Child Neurology Foundation or the RARE Concierge program, please contact [email protected].  

If you are an organization looking to learn more about how to join the Neurology Social Services Network to support families, visit the website:

About Global Genes
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of that mission, Global Genes connects, empowers, and inspires the rare disease community to stand up, stand out, and become more effective on their own behalf⁠—helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. Global Genes serves more than 400 million people around the globe, and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or through the website.

About The Child Neurology Foundation

The Child Neurology Foundation (CNF) is a patient advocacy organization with a mission to serve as a collaborative center of education, resources, and support for children and their families living with neurologic conditions and facilitate connection with the medical professionals who care for them. CNF was established in 2001 by one of the nation’s first pediatric neurologists, Dr. Kenneth Swaiman, and continues to be guided by a Board of Directors that is more than half comprised of pediatric neurologists. Headquartered in Lexington, Kentucky with staff working across the United States, CNF is committed to helping children and their families living with a neurologic condition receive the best quality of care and achieve their highest quality of life possible.