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Last chance to submit a RareVoice Nomination!
MaryO posted a topic in Announcements1) Visit RareVoiceAwards.org 2) Review the 2021 RareVoice categories 3) Nominate an advocate who gave rare disease patients a voice on Capitol Hill and in state government in 2020 and 2021. 4) Submit! The RareVoice Awards recipients are chosen by a committee from nominations received from the rare disease community. Nominations close August 27th, 2021 Federal Advocacy – Congressional Staff Honors congressional staffers who have worked to create and enact policies for the rare disease community Federal Advocacy – Patient/Organization Honors advocates or organizations that have worked to create and pass federal legislation State Advocacy – State Legislator Honors state legislators who have worked to create and enact policies for the rare disease community State Advocacy – Patient/Organization Honors advocates or organizations that have worked to create and pass state legislation Federal or State Advocacy by a Teenager Honors teen advocates that have advocated for state or federal legislation Diversity Empowerment - Patient/Organization Honors advocates or organizations that empowered diverse voices in advocacy Artist-to-Advocate Honors individuals who have utilized their artwork to advocate for federal or state legislation For information about sponsorship, please contact Elissa Taylor, firstname.lastname@example.org EveryLife Foundation For Rare Diseases 1012 14th Street, NW, Suite 500 | Washington, District of Columbia 20005 202-697-7273 | email@example.com
Study Opportunity for Cushing's Patients
MaryO posted a topic in AnnouncementsThis is a 30 min Online Survey and Compensation is $50.00 Sign up at the link below to receive an email invite to the study and see if you qualify https://rarepatientvoice.com/CushingsHelp/
MaryO posted a topic in News Items and ResearchWe have an opportunity for you to take part in a Cushing's Disease study(IPS_4636) for Patients. Our project number for this study is IPS_4636. Project Details: Web- Camera Interview There is a homework component Interview is 75-minutes long 125 Reward + 100 homework Things to Note: Patient study only, Caregivers please pass the link along Unique links, please do not pass along for 2nd use One Participant per household Want to share this opportunity? Let us know and we can provide a new link Preliminary questions are Mobile Friendly! Save this email to reference if you have any questions about the study! If you have any problems, email firstname.lastname@example.org and reference the project number. If you hit reply, you will get an auto do-not-reply email. If you are interested in this study, please click the link below to answer a few questions to see if you qualify. Study Link: Link OR if the Study Hyperlink is not clickable above, please copy/paste this URL below. https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/surveystart.php?surveyID=hld5jbejublj&panelMemberID=trfnbc7mvduh1gseff1h&invite=email Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.