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Dec. 22, 2016

TOPIC: Featured News, Get Involved, Patient Stories

Family Moves Across State Lines to Receive Better Access

Posted by Christina Jensen
Gabby was born with the rare condition vanishing gastroschisis and lives with short bowel syndrome.

Gabby was born with the rare condition vanishing gastroschisis and lives with short bowel syndrome.

Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational treatment, and a near-fatal infection.  When Gabby was born with the rare disorder known as vanishing gastroschisis, her family was forced to contend with mounting medical bills, inadequate insurance coverage, and endless barriers to access of a state Medicaid waiver. Ultimately, they moved far from their home state and families for better access to services.

There are millions of people, like Gabby and her family, who benefit when you take action in the fight to improve diagnosis, treatments and cures for rare diseases.

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While each family’s experience with a rare disease is unique, no one should have to feel alone in their journey. We first met Gabby and her mom, Tammy, when they attended a NORD patient meeting for Short Bowel Syndrome, Gabby’s lifelong medical condition. Today, Tammy is an active rare disease advocate, joining NORD and a growing network of advocates to ensure that the voices of the rare disease community are heard.

The recent launch of NORD’s Rare Action Network unites the community and provides everyday people with avenues for raising awareness about the unmet needs of those who are battling rare diseases. Together, we can drive policy changes on Capitol Hill and in all 50 states to make rare diseases a national priority.

Please consider making a tax-deductible gift to support NORD’s mission to help 30 million Americans with rare diseases.  Together we are strong, with patients and families like Gabby’s, whose stories compel us to advocate for even greater change in 2017.

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