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November 2, 2020November 5, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with ... Read more

October 26, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

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A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured ... Read more

October 19, 2020October 19, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

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A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option ... Read more

October 8, 2020October 8, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

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Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs ... Read more

September 10, 2020September 9, 2020

LLS Highlights Its Support Programs During Blood Cancer Awareness Month

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Throughout September for Blood Cancer Awareness Month, the Leukemia & Lymphoma Society (LLS) is asking the public to join its commitment to research, ... Read more

August 31, 2020August 31, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

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Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to ... Read more

August 24, 2020August 24, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

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Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

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The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who ... Read more

August 10, 2020August 11, 2020

New Streaming Channel Showcases Rare Disease Films

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When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out ... Read more

August 3, 2020August 3, 2020

Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

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To raise awareness of the rare disease communities and celebrate the creativity of its members, the EveryLife Foundation for Rare Diseases ... Read more