• Mashup Score: 1
    CTG Labs - NCBI - 7 month(s) ago

    Hide glossary Study record managers: refer to the Data Element Definitions if submitting registration or results information.

    Source: clinicaltrials.gov
    Categories: Latest Headlines, Rare Disease
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    • Profile photo of alsadvocacy
      alsadvocacy

      An interesting new tool for finding trials that are actually trials and not just pay-to-play stabs in the dark. With something like this (plus my dream of having https://t.co/2V5OzxVe12 mark listings that are pay-to-play), it would really help people find legit research. https://t.co/NHo8K99lVs

  • Mashup Score: 4
    Student Awareness & Fundraising - 7 month(s) ago

    Creating rare disease fundraising ideas and awareness for student organizations

    Source: rarediseases.org
    Categories: Latest Headlines, Rare Disease
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    • Profile photo of RareDiseases
      RareDiseases

      We hosted a meetup of #StudentsForRare leaders from schools and universities around the country here in DC before tomorrow's #NORDSummit. The future of #RareDisease advocacy depends on the folks in this room! Join Students for Rare: https://t.co/2pI8V8Nog7 https://t.co/pKhEkwDvKt

  • Mashup Score: 0
    NORD Breakthrough Summit | Rare Disease Conference - 7 month(s) ago

    NORD Summit is one of the largest events in rare disease, bringing together participants spanning the rare community.

    Source: nordsummit.org
    Categories: Latest Headlines, Rare Disease
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    • Profile photo of RareDiseases
      RareDiseases

      🔈 LAST CHANCE! + Virtual Option! The 2023 #NORDSummit is just 3 days away! We're *ecstatic* about everyone who has registered to attend. If you haven't, this is your last chance! Join us in DC or virtually by registering here: https://t.co/atVC9JhurQ https://t.co/BytiBMcEb8

  • Mashup Score: 0
    PAP-a-palooza 2023 Interest Form - 7 month(s) ago

    On Saturday, October 14th we’ll be hosting an in-person PAP event in Los Angeles, CA at UCLA. Please secure your spot and stay in touch for future communications by filling out this interest form. We welcome all PAP patients, family members, caregivers, and clinicians to join us for this event. We’ll discuss the latest on PAP research and treatment, connect with one another, and much more! Plus, we would like to hold additional events around the educational sessions this year, giving us more time to connect with one another. While we don’t have a time officially selected for the event yet, our Education Days typically start in the late morning to early afternoon, include a meal, and last for 4-5 hours in total. We will be offering travel reimbursement for those who need it to attend. Please fill out an interest form for each person who would like to attend. We’re excited to connect with our community and share helpful information together. Stay tuned for more, and we look forward to se

    Source: docs.google.com
    Categories: Latest Headlines, Rare Disease
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    • Profile photo of RareDiseases
      RareDiseases

      .@PAP_Foundation's second annual event will host new speakers, sessions, and opportunities to connect as one #PAPCommunity. Join them at the Meyer and Renee Luskin Conference Center at @UCLA on October 14! Please register here: https://t.co/fldEdUCXyI #PAPaPalooza

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