IDefine Blog
IDefine News  - August 20, 2023
Matt Lockwood - AUTHOR

IDefine’s Margo Metzger Joins EveryLife Foundation for Rare Diseases

IDefine’s co-director of communications, Margo Metzger, has been named Senior Director of Marketing and Communications at EveryLife Foundation for Rare Diseases, a national nonprofit and a major force in advocating for those navigating the challenges of rare conditions. Margo’s personal connection to the cause, as the mother of a child with Kleefstra Syndrome, combines her strategic communication expertise with a deepwell of empathy and understanding.

“In addition to my professional background in marketing and communications, joining forces with other KS parents to help launch IDefine prepared me for this new role,” said Metzger. “That volunteer experience has turned me into a passionate advocate for our loved ones living with KS, and now I’m excited to increase and expand my focus to help the rare disease community at large. In turn, I’m also hopeful that I can apply my learnings at EveryLife back into IDefine.”

Diseases are considered rare if they impact less than 200,000 people in the United States. Though the number of people with each rare disease is small, rare diseases collectively affect a significant portion of the population. Approximately every 1 in 10 people is impacted by one or more of the 10,000+ rare diseases. That’s about 30 million people nationwide.

The mission of EveryLife Foundation is to empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

The policy goals at EveryLife Foundation are centered around several pillars that align closely with the mission of IDefine:
● Closing the innovation gap for the 93 – 95% of 7,000 rare diseases that have no FDA-approved treatment
● Eliminating the diagnostic odyssey, averaging more than six years, for rare disease patients
● Improving the regulatory process and advance regulatory science for rare disease therapies
● Ensuring patient access to safe and effective therapies and cures at the earliest moment possible

EveryLife Foundation also provides tangible support to rare disease advocacy groups like IDefine. Just in the past month, the IDefine team followed the ICD Code Road Map created by EveryLife and successfully fulfilled the need for a code specific to Kleefstra Syndrome.

“IDefine and EveryLife are in total alignment in our quest to improve the lives of the rare disease community,” said Geoff Rhyne, CEO of IDefine. “Margo is a rockstar and I know she will do great things for EveryLife, just as she has for IDefine.”

As EveryLife Foundation for Rare Diseases charts a course into a future ripe with potential, Metzger’s arrival marks a pivotal juncture in amplifying the voices of those who have long been unheard. Her unique perspective as a parent of a child with Kleefstra Syndrome infuses her strategic efforts with a heartfelt commitment to driving change and bringing hope to the rare disease community.

“This work is near and dear to me — I actually applied for the job on Mother’s Day morning, which seemed fitting,” Margo shared. “I am so grateful for the opportunity to help make progress not only for my daughter, Adelind, but also for so many others living with rare diseases who seek access to treatments and cures.”