Care4ASH1L

Raise awareness on social media platforms like Facebook Twitter Instagram and LinkedIn. We have been providing updates & information using digital posters & brochures. We have raised awareness by appearing on a local radio and TV interview. We are reaching out to various hospitals in Canada to encourage geneticists to pursue genetic testing and connect with our community in case anyone is diagnosed with the ASH1L condition. With the help of our ASH1L researchers we are continuing to work on Patient Registry and enrolling ASH1L affected families into the registry at Brown University Rhode Island. On 21 April 2023 we hosted our second virtual ASH1L Scientific Conference which was attended by our ASH1L families. All the ASH1L researchers presented to our families about their ongoing research progress. The Volunteer Committee comprising of 10 volunteers have contributed to a total of 5 hours and 20 minutes. The responsibility of the committee is to help raise awareness and funds for the research. The team is helping us identifying federal and provincial grants. We are applying for the PCORI grant to help support us organize Researchers-Patients conference for capacity building and community empowerment.