Additional institutions in California, New York and North Carolina strengthen a national network connecting more than 170 academic medical centers, research institutions, and children’s hospitals to advance rare disease care…
Read article
The Centers for Medicare & Medicaid Services (CMS) has finalized new Medicaid community engagement (work) requirements that states must begin implementing by January 1, 2027. To help state policy leaders…
Read article
Join us on May 2015 in Washington DC to celebrate the successes of the rare disease community.
Read moreJoin us on May 2015 in Washington DC to celebrate the successes of the rare disease community.
Read moreNORD launches the nation’s only Rare advocacy network.
Read moreVanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her …
Continue reading “Multiple Endocrine Neoplasia Type 1: One Family’s Fight”
Read moreOn February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. …
Continue reading “Taking Action for ACD”
Read moreIt’s truly amazing to hear everyone’s unique personal story on why medical research is important to them. Whether it’s a parent whose son or daughter is living with a rare …
Continue reading “Medical Research Should Be Everyone’s Priority”
Read moreEditor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day. I was diagnosed with essential thrombocythemia (ET) at age 16 after …
Continue reading “Living with Blood Cancer”
Read moreCarmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17
Read moreThe day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened …
Continue reading “The Will to Live and the Strength for a Cure”
Read moreThe diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with …
Continue reading “Illinois Man Uses His Myelofibrosis Story to Help Others”
Read morePlease complete this form to access the requested resource.
