📅 Invitation to 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.
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

✍️ Sign Up and Enjoy Patient Benefits

 

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!

 

⁉ What Do *You* Think?

This question was originally posted on Facebook.

 

I responded with a quote from this book: Harvey Cushing: A Life in Surgery

“Dr. Harvey Cushing, who is the one responsible for discovering our disease, found some of his patients in circuses.”

Other responses so far:

OP:  Thank you for sharing this Mary Kelly O’Connor… as sad as this is… that our past cushing’s friends were on display as freaks in circuses, i am happy he was able to find them and help them and further his research.

Mary Kelly O’Connor: I remembered from reading this book many years ago.

For a long time, I was “mad” at circuses until I realized that they were the only people offering jobs to Cushies and others who should have had a better chance at life.

I know the circuses were exploiting the “freaks” but at least they could find a place in society.

I am so thankful to Dr. Cushing and the work he did…for all of us. I hate the disease but I am so glad that I’m alive after it was discovered and I didn’t have to run away to join a circus, too.

OP: Mary Kelly O’Connor i also am thankful to dr harvey cushing… even though i did read he was sorta an asshole arrogant jerk. Lol. I guess when you are the father of neuroscience you are entitled though…

Mary Kelly O’Connor:  My first “real” endo, the one who diagnosed me was that description. But he got me into NIH for surgery and I’m thankful to him, too. (But I never went back after I found another endo. LOL)