by admin | Feb 19, 2020 | News
Are you a part of the ECD Patient Registry? Did you know that it is extremely important to take part in such a registry? Understanding every aspect of trials, registries, or simply getting treatment for a rare disease can be overwhelming. Let us help explain the...
by Asmaa Javed | Jan 2, 2020 | News
The following link is to the protocol for an ECD study as announced by Dr. Augusto Vaglio of the University of Parma in Italy. ECD patients are invited to participate by sending in medical records. The study aims to gather medical records for 120 ECD patients and then...
by Asmaa Javed | Jan 2, 2020 | News
Caregiver Information Any caregiver interested in connecting with others who love and care for ECD patients, please contact the organization. Caregiving is a very difficult job. For many carers, the physical and emotional demands are constant and leave you feeling...
by Asmaa Javed | Jan 2, 2020 | News
Foreign Language Instructions to Register for the ECD Conference in Barcelona on 26 May 2025 Open Chrome as your internet browser. Go to the registration page at – https://secure.qgiv.com/for/bpfg/event/barcelonapatientfamilygathering Click on the three vertical...
by admin | Dec 28, 2019 | News
Yet another year is coming to a close! We are grateful to the ECD community for continuing to support the organization in its mission to serve families around the world. With the help of countless donors, volunteers, and medical professionals, the ECDGA has been able...
by admin | Sep 28, 2019 | News
Matriarch, President and Founder of the ECD Global Alliance: Kathleen Brewer. Over the last 10 years, Kathy kept her promise to never stop searching for answers. Kathy’s perseverance through the trials and tragedy led her to what the ECD Global Alliance is today....
