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Found 4 results

  1. MaryO

    Rare Disease Day

    Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards. My husband also passes out cards and brochures. Adding to websites, blogs and more which I have maintained continuously since 2000 - at mostly my own expense. Posting on the Cushing's Help message boards about Rare Disease Day. I post there most every day. Tweeting/retweeting info about Cushing’s and Rare Disease Day today. Adding info to one of my blogs about Cushing’s and Rare Disease Day. Adding new and Golden Oldies bios to another blog, again
  2. For those who can not make it to Washington, DC next week, we're pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing. Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing: The Diagnostic Odyssey Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m. 121 Cannon House Office Building Complimentary lunch includ
  3. MaryO

    Patient Day 2018

    Please join us for Patient Day 2018 at Ultragenyx in Novato, CA on Saturday, April 7, 2018, for a day of live music, food, games, refreshments, and much more! A limited number of travel scholarships will be available for patients and loved ones that may be joining them to support their participation in Patient Day 2018. For event details, travel scholarship information and to register, please click here. An email confirmation will be sent to you upon completion of your registration. Travel scholarship awards will be sent out after February 1, 2018, once a decision is made.
  4. Sign Up and Enjoy Patient Benefits To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently, we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards. Please be aware that each entry is checked individually. Please include your correct personal phone number a
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