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December 2019

CME: Spinal Muscular Atrophy

December 12 @ 2:30 pm - 3:30 pm

Spinal Muscular Atrophy: Best Practices in Diagnosis and Management is a live educational webinar that will summarize clinical practice and consensus guidelines for the comprehensive management of spinal muscular atrophy (SMA). Strategies for incorporating new disease-modifying therapies for SMA into daily clinical practice will be highlighted. This webinar is intended for pediatric neurologists, neurologists, pediatricians, primary care physicians, internal medicine physicians, nurse practitioners, physician assistants, physical therapists, occupational therapists and other health care professionals interested and/or involved with the management of patients with SMA.…

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NORD Webinar – Life After Gene Therapy

December 18 @ 3:00 pm - 4:00 pm

This webinar will feature individuals who have undergone gene therapy procedures. Don't miss this exciting opportunity to hear people share their personal journeys with gene therapy. What were their symptoms before gene therapy? How did they find a clinical trial or a doctor? What were the necessary preparations for gene therapy? How was the gene therapy treatment procedure? And what is life like now? Join us to learn hand how gene therapy is impacting the lives. This webinar is perfect…

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February 2020

Rare Disease Day 2020

February 29, 2020

Each year on the last day of February, the rare disease community comes together to raise awareness for the 25-30 million Americans impacted by rare diseases. Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. It’s never too early to get involved! The National Organization for Rare Disorders (NORD) is…

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May 2020

Living Rare, Living Stronger: NORD Patient and Family Forum 2020

May 14, 2020 - May 16, 2020

NORD CEO Peter L. Saltonstall has some big news to share on the city we are taking the Living Rare, Living Stronger: NORD Patient and Family Forum to in May 2020, plus the amazing venue for the Rare Impact Awards! Get ready to rock!   Check our site for last year's highlights and upcoming details.

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