Search the Community
Showing results for tags 'rare disease'.
Found 4 results
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 most every day. Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April...and will anyone else participate? And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!) ~~~ Today is Rare Disease Day. I had Cushing's Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a "success" but I still deal with the aftereffects of Cushing's and of the surgery itself. I also had another Rare Disease - Kidney Cancer, rare in younger, non-smoking women. And then, there's the secondary adrenal insufficiency...and growth hormone deficiency... If you're interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/ What are YOU doing for Rare Disease Day? HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
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 included Registration available on-site Register for the event livestream by clicking this link. If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at firstname.lastname@example.org.
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. We welcome all families living with any rare disease to join us in celebrating their strength and courage, while also recognizing their daily challenges and sacrifices. The interactions between our employees and families provide a first-hand education about living with rare disease and further inspires the work we do for patients and families. We would like to honor and thank all of the patients who are participating in our clinical trials; however, we also have to follow federal regulations regarding the avoidance of influencing patients in our studies. So sadly, we cannot have patients who are currently participating in selected Ultragenyx or Audentes studies attend Patient Day 2018. If you are a healthcare provider caring for people with rare diseases, please feel free to forward this invitation to your relevant patients. Please contact us if you have any questions or are unable to access the registration site. Hope to see you there! Patient Day Registration Team (415) 695-8001 PatientDay@keyevents.com
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 as we will call you to verify your information. It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information. At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories! Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey. Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year. We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years! Register here!