The Clinical Consortium for ADLD, a group dedicated to improving care for patients with this rare neurodegenerative disease, has been making strides over the past few months.
In an effort to establish standards of care, the Consortium is bringing together six to eight clinicians experienced in treating ADLD. These experts aim to develop clinical guidelines by the end of the year that will be implemented at select care centers with specialized ADLD programs.
Research is also ramping up. The Orphan Disease Center at the University of Pennsylvania, in partnership with the Consortium, recently awarded two $50,000 pilot grants to promising projects investigating the mechanisms and potential treatments for ADLD. The studies will begin in the coming months and could provide key insights into this complex disease.
Raising awareness and helping patients navigate diagnosis and care remains a priority. A genetic counseling graduate student intern created an ADLD handbook for patients and caregivers over the summer in collaboration with the Consortium. The comprehensive guide covers topics like genetic testing, symptoms, caregiving tips, and more. Be on the lookout for the official launch of the handbook later this year.
For those hungry for more ADLD knowledge now, a webinar hosted by the Consortium in December 2022 is available to view online. The “Ask a Clinician” session features a panel of experts answering common questions about diagnosis, disease progression, clinical trials, and everyday management of ADLD. You can also watch the video below.
Stay up-to-date on the latest ADLD developments by subscribing to our newsletter today. The coming months promise to yield exciting progress in understanding and treating this challenging disease.