CATEGORIES: Living with CMT | Registry
Don't walk Alone

HNF Awarded 2023 Health Equity in RARE Impact Grant

by | May 15, 2023 | 0 comments

HNF Awarded 2023 Health Equity in RARE Impact Grant  For Spanish CMT PSA Awareness Campaign with Diagnosis & Patient Care Toolkit

The Hereditary Neuropathy Foundation is thrilled to announce that we are a recipient of the Global Genes Health Equity in RARE Impact Grant!

The grant will fund the “No Camines Solo/Don’t Walk Alone” campaign, a Spanish CMT PSA Awareness Campaign with Diagnosis & Patient Care Toolkit. 

Why a Spanish Campaign?

Due to economic, language, and medical specialist barriers, Latino/a/x individuals are less likely to receive a CMT diagnosis and proper care. A report by the Kaiser Family Foundation found that Latino/a/x adults were more likely to report problems accessing healthcare compared to non-Latino/a/x white adults, with language and lack of health insurance cited as key barriers. In addition, Latinos/a/x are at the highest risk of being uninsured, with nonelderly adult Latino/a/x nearly two and half times as likely to be uninsured than nonelderly adult whites (22% vs. 9%). Uninsured children rates are lower than those for adults, but Latino/a/x children are still twice as likely as white children to be uninsured (8% vs. 4%).

About The Campaign

Our project will focus on disseminating a targeted bilingual awareness campaign starting with the top 20 Spanish-speaking zip codes in NYC, home of HNF and the city with one of the largest populations of our target demographic.

According to the U.S. Census Bureau 2019, approximately 2.4 million people in NYC speak Spanish at home, about 28.6% of the city’s population.

Our focus is to support Spanish-speaking Latino/a/x individuals in self-identifying their CMT symptoms and providing vital CMT diagnostic resources, patient care, and research data.

Additionally, we will focus on educating newly identified patients on future clinical trials and provide bilingual genetic counseling services (already available) with sponsored genetic testing via HNF’s CMT Genie.

We anticipate increased diagnosis and awareness of CMT in the NYC area, including among children. According to HNF’s Global Registry for Inherited Neuropathies, GRIN, 23.5% of CMT patients/caregivers reported experiencing symptoms in childhood (0-10 yo) yet waited ten or more years for a CMT diagnosis.

Nine of 102 Global Advocacy Alliance organizations submitted received the 2023 Health Equity in RARE Grants. These grants will allow patient advocacy organizations to improve outreach strategies, develop content, and address challenges that affect underserved and underrepresented people within the rare disease patient community.

HNF is currently seeking bilingual volunteers to join our mission. If you are interested in donating translation services, please email Estela Lugo at [email protected].

Learn more on this topic

Related Blog Posts

Join the conversation

Leave a Comment


Submit a Comment

Your email address will not be published. Required fields are marked *


Join for notifications on events, campaigns, & news