Upcoming Events › Rare Disease

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May 2023

National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum

May 6

Renaissance Downtown Hotel, 999 Ninth St
Washington, DC 20001 United States + Google Map

NORD's Living Rare, Living Stronger Patient & Family Forum May 6, 2023 featuring the Rare Impact Awards (May 4) Hosted at the Renaissance Downtown Hotel, we will bring the rare disease community together in our nation’s capital for a day of learning, networking and fun! Hear real stories from our community and gain practical knowledge to help you live your best life while navigating your rare disease journey. To register, click here.

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We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

Upcoming Events › Rare Disease

Events Search and Views Navigation

Events Search

Event Views Navigation

May 2023

National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum

X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition

Catalyst’s LEMS Aware Podcast Helps Connect Patients

Make a difference, share your experiences and get paid. Opt-in & join Patient Worthy’s panel for paid opportunities such as Surveys, Market Research, Patient Advisory Panels & much more.

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

Let’s Work Together!

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