The COVID-19 global pandemic has forced dramatic changes to all our lives. Individuals with Rett syndrome and their families may be struggling to adjust to this new reality. The Ontario Rett Syndrome Association (O.R.S.A.) stands with you and is here to support you.
All three Rett syndrome clinics in Ontario have suspended in person appointments. If you have an upcoming appointment and have not been contacted, you should get in touch with your clinic coordinator. Appointments may be rescheduled or done by phone.
The Pilot Study of an Antioxidant Cocktail vs. Placebo at Holland Bloorview Kids Rehabilitation Hospital will not be recruiting patients at this time. Most of the clinical trials for Rett syndrome in the United States have been put on hold as well.
Due to social distancing we have postponed the conference planned for May and we will not be holding the Rett Classic golf tournament this June. We will provide an update in the coming weeks on the status of these events and Run4Rett.
Here are some resources that may be helpful:
O.R.S.A. will continue to provide updates as they become available. Feel free to contact us at firstname.lastname@example.org with any questions or concerns. Together we will get through this.