The National Foundation for Ectodermal Dysplasias (NFED)
The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders.
They offer three pillars of advocacy: Education, Support and Research; NFED offers a range of educational resources and events to meet the changing needs of those affected by the different types of ectodermal dysplasias, lifelong support for individuals and families affected by ectodermal dysplasias and encouragement and support of medical, dental, genetic and other ectodermal dysplasia–related research to improve the health and quality of life of everyone living with ectodermal dysplasia.
For their Member Impact Project, NFED launched two projects: Ensuring Lasting Smiles Act (ELSA) which promotes awareness, engagement, support, and advocacy for the passage of ELSA in the US House & Senate. This bill requires insurance companies to provide coverage for genetic anomalies, because many often classify claims as “cosmetic,” triggering years of fighting.
The second initiative is an Ectodermal Dysplasias Awareness Month (EDAM) – The month of February is devoted to an awareness campaign dedicated to educating affected individuals, families, and supporters on the issues, needs, treatments, and research related to specific forms of ectodermal dysplasias, with a key emphasis on dermatological issues.
The Member Impact fund allowed the organization to hire dedicated social media project marketing support which propelled these initiatives forward.
Patient Experiences - Ensuring Lasting Smiles Act (ELSA)
Kevin Koser is co-chair of the Family-Driven Advocacy Committee at NFED. His son, Kannon, is his inspiration for getting ELSA passed. “I’m so proud of the progress that the NFED, our family advocates, our professional coalition of health organizations, and the bill’s leads have made to advance the Ensuring Lasting Smiles Act so far. In just one full Congressional session, ELSA became one of the most supported health care bills on the Hill. I feel confident that the bill’s support and momentum will continue to grow in this new 117th Congress, ultimately leading to its final passage.” - Kevin Koser
Aidan Abbott not only coined the name of the bill, he also inspired Senator Baldwin to write it. “Aidan’s story continues to inspire my work on this issue to guarantee that individuals born with congenital anomalies have access to the comprehensive health treatments and coverage they need. Despite covering all of his other medical care, his family’s insurance continues to refuse to cover his dental care needs, forcing them to spend thousands of dollars out of their own pockets. That’s why I’m introducing bipartisan legislation to close this loophole and make sure families like Aidan’s can get the health care they need at a price they can afford.” - Senator Baldwin
Success of the campaign
(Regarding the power of NFED’s marketing efforts): Senator Ernst said, “Young Iowans, like Alli Steele and many others, have been diagnosed with ectodermal dysplasia. When their families realized the procedures would cost thousands of dollars out of pocket because they weren’t covered by their health plans, they turned to elected officials for help. Their stories and struggles are the reason I’ve teamed up with Democrats and Republicans on this effort to ensure that all health plans cover medically necessary services related to a patient’s congenital abnormality, including reconstructive surgeries and oral-related procedures.”
As a result of NFED’s efforts, CNN wrote a great article about the bill. Read it here. Having both Democrats and Republicans co-sponsoring the bill gives us great hope that we will get ELSA passed in this Congressional session.
Learn more about this organization by visiting their website: https://www.nfed.org/
Follow them on social media:
Facebook: https://www.facebook.com/NationalFoundationforEctodermalDysplasias/
Twitter: https://twitter.com/NFED_ORG
LinkedIn: https://www.linkedin.com/company/national-foundation-for-ectodermal-dysplasias/
