Published August 23, 2018 by NORD
The following is a guest blog post from John Hopper, President of the Fibrolamellar Cancer Foundation, a NORD Member Organization. Huge thanks to NORD leadership! Fibrolamellar Cancer was just approved as …
Read morePublished August 6, 2018 by NORD
Washington, D.C., August 6, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement …
Continue reading “NORD Issues Statement on the Passing of Dr. Robert M. Campbell”
Read morePublished July 19, 2018 by NORD
Watch the latest release from NORD’s RareEDU™ on gene therapy.
Read morePublished July 11, 2018 by NORD
Dr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 …
Read morePublished July 9, 2018 by NORD
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure …
Read morePublished May 21, 2018 by NORD
We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! …
Continue reading “Save the Date for NORD’s 2018 Rare Summit”
Read morePublished May 4, 2018 by NORD
For 35 years, NORD has been leading the fight to improve the lives of patients and families with rare diseases. We do this by supporting patients and organizations, accelerating research, …
Continue reading “35 Ways and Growing: NORD’s Service to the Rare Disease Community”
Read morePublished April 25, 2018 by NORD
Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia …
Continue reading “Robert Campbell, Jr., M.D.: 2018 Lifetime Achievement Award Honoree”
Read morePublished April 25, 2018 by NORD
The GBS|CIDP Foundation International, one of the first member organizations of NORD, works towards a future when no one with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related …
Read morePublished April 25, 2018 by NORD
Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital of Louisville. Each …
Continue reading “Patrick Dunegan: 2018 Rare Impact Award Honoree”
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