Rare Diseases Clinical Research Network Conducts Patient Survey
May 11, 2020 – The Rare Diseases Clinical Research Network (RDCRN) funded by NIH is conducting a survey to better understand how patients/caregivers with rare diseases have been impacted by the COVID-19 pandemic. This survey will provide an opportunity for rare disease patients and their caregivers to share their experiences to help researchers learn more about community needs during a time of crisis. Further information about RDCRN and the purpose of the survey can be found at: https://www.nih.gov/news-events/news-releases/nih-supported-research-survey-examine-impact-covid-19-rare-diseases-community
If you are an individual with thalassemia (or their caregiver), you are invited to participate in this 20-minute online survey at: https://RareDiseasesNetwork.org/COVIDsurvey