News - RESEARCH

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

SwanBio Therapeutics gene therapy for AMN

January 2022

Opening first clinical study to treat patients The FDA have cleared the Investigational New Drug application for SBT101, SwanBio Therapeutics gene therapy candidate for AMN. This means that they are able to proceed towards opening their first clinical study to treat patients with AMN with SBT101 at sites in the US.

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APPG Dementia Survey

January 2022

All Party Parliamentary Group on Dementia seeks written evidence Please take the time to get involved with the All Party Parliamentary Group on Dementia survey. This may be of interest to individuals affected by Leukodystrophies that can cause dementia symptoms. The information below was taken from the Disability Rights January 2022 Newsletter, if you have any questions please contact info@alextlc.org

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Alex TLC Research Summary

January 2022

Research Summary January 2022 Our latest Research Summary is ready to view, which includes information about recent and existing Leukodystrophy studies.

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Co-producing Research Webinar

January 2022

Co-producing research with the Cambridge Patient Led Research Hub Webinar The Cambridge Patient Led Research Hub (PLRH) are holding an online webinar that highlights how they work with patient charities and organisations to co-produce quality research to benefit patients. Three Rare Disease charities ( PKD Charity,  Ring 20 Research and Support UK CIO and Lupus UK’s Cambridge Support Group ) will share their experience of working the PLRH.

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