Assorted news from last week:
Upcoming Webinars and Online Opportunities:
Rare Disease Day at NIH will be held virtually on Monday, Feb. 28, 2022, from 10 a.m. to 6 p.m. EST. This year’s event will feature panel discussions, rare diseases stories, virtual exhibitors and scientific posters. Registration and Information Link. FDA is hosting a virtual public meeting on March 4, 2022, 9:00 am to 4:30 pm EST in honor of Rare Disease Week. They’ve planned for various stakeholders to share their perspectives/experiences in rare disease product development. Please visit the public meeting page to register.
Recordings of Recent Past Events:
- Patti and Al Gustafson (Swifty Foundation)
Take Action:
Childhood Cancer Prevention Day will be held on Monday, February 28. Help share why PREVENTION MATTERS. Access the social media toolkit here: https://www.prep4gold.org/prevention. World Rare Disease Day is celebrated on February 28th (or 29th in leap years)—the rarest day of the year. This is a global movement to raise awareness for people living with a rare disease, their families, and caregivers. Visit RareCaregivers.org for information and support for caregivers of loved ones living with rare diseases. Be sure to follow and like CAN on Twitter, Facebook, and Instagram and help us spread the word about #RareCaregiverAnd. The EVAN Foundation is excited to announce the launch of the Evan Lindberg and Erik Ludwinski College Scholarship Program for Childhood Cancer Survivors. High school seniors can apply for awards of $2,500 a year, renewable annually for four years of undergraduate coursework. Applications will be accepted starting March 15th. Two scholarships will be awarded in 2022. For more information, please visit: www.evanfoundation.org. Kaitlin Tuinstra (ktuinstra@msp.edu), a current clinical psychology doctoral student at the Michigan School of Psychology is studying the effects of family functioning on medication adherence in pediatric cancer patients. Please contact her if you are a “parents of children (age 8-17) who have been diagnosed with any form of pediatric cancer and are actively undergoing treatment or disease maintenance” if you would consider completing “a ~20 minute online survey to share their experience of family functioning, condition management, and medication adherence. This study has been approved by the Michigan School of Psychology Institutional Review Board (study #210701).” Parexel, a global leading contract research organization (CRO), has recently created a new Patient Advocacy Manager role to ensure that patient voice and insights are included in all aspects of clinical research. As they build out this new role, they want to make sure they are designing it with the needs of Patient Advocacy Groups and Patient Communities in mind. They ask that you please take a few minutes to answer the seven questions in this survey: https://www.surveymonkey.com/r/2P3FZLB? All answers are anonymous.