I am an Alpha 1 Antitrypsin Deficiency - AATD patient and Advocate, Protease Inhibitor PiZZ genotype. Most recently appointed onto the Global Liver Institute Council for Pediatric and Rare Liver Diseases. A founding member of Alpha 1 Advocacy And Action Coalition est. 2011 supporting global Alphas, stakeholders and the founding member of Little Alphas - for parents of Alpha 1 Kids est. 2015 supporting global Alpha 1 parents, Alpha 1 Kids, Childhood Liver Disease Research Network (ChiLDReN) and stakeholders with membership of numerous online Alpha 1 patient groups. Seeking a symbiotic collaborative designation with a stakeholder to create more awareness and support for Alphas in global and Canadian patient and medical communities in accordance with local and global regulatory, research and development scientific pathways. Providing a patient perspective and presentation online and at industry stakeholder events in written or verbal presentations. We were 5 siblings, 2 PiMZ living and 3 PiZZ, 2 siblings died before the age of 40. Our brother developed a paediatric Pigeon Chest and a sister passed from a1 Panniculitis and the loss of a baby to paediatric liver disease. Fortunately I have had the benefit of world class medical care in Canada with antitrypsin augmentation therapy since 2015 at COPD 4 through End Stage to double lung transplant October 2021 surpassing longevity of family members due AATD being well managed by medical and clinical care pathways needed for the survival of severely affected Alphas. Witnessing our sister passing left an indelible memory and being diagnosed in 2000 shortly thereafter I knew this meant I needed to study every aspect of AATD so I could understand. I started reading and have not stopped. Paying particular attention to the protein’s functionality, DNA, genetics, clinical trials, charities, local and global regulatory, research and development, clinical pathways, protein plasma line management mostly from medical journals, stakeholder statements, and any reliable information disseminated. Studying historical case studies to up to the minute scientific clinical trial design and implication. All in my quest to help Alphas and newly diagnosed understand the importance of their health, wellbeing, diet, longevity and most importantly to have a health care plan, making it to medical appointments a priority, while we are forging forward finding therapies and onto the full and final cure.
Alpha 1 Advocacy & Action Coalition
-
Patient AdvocateAlpha 1 Advocacy & Action Coalition Sep 2011 - PresentCanadaGlobal Patient Advocate, Global Liver Institute- Pediatric & Rare Liver Disease. Facebook patient advocacy groups: Alpha 1 Antitrypsin Deficiency & Action Coalition, Little Alphas and Alpha 1 MZ & Neuro Alpha 1, member of multiple groups. Focusing on Alpha 1 Pediatric & Rare Liver Disease advocacy & policy - Global Liver Institute. Studies historical, current journal, medical literature. Focused on patient wellbeing and ability to gather information to be able to explain difficult facts about the protein deficiency causing multiple and at time serious medical complications at various age related stages of Alpha 1 lifetime with emphasis on empathy from personal experience and peer care for the greater Alpha 1 global community.
Margaret Millar Education Details
-
In Progress.
Frequently Asked Questions about Margaret Millar
What company does Margaret Millar work for?
Margaret Millar works for Alpha 1 Advocacy & Action Coalition
What is Margaret Millar's role at the current company?
Margaret Millar's current role is Patient Advocate at Alpha 1 MZ Foundation Information & Research, Global Liver Institute - Pediatric & Rare Liver Diseases Alpha 1 Advocacy & Action Coalition AAAC.
What schools did Margaret Millar attend?
Margaret Millar attended In Progress..
Not the Margaret Millar you were looking for?
-
Margaret Millar
New Minas, Ns1danieletdaniel.ca -
Margaret Millar
Kingston, On -
1royallepage.ca
-
margaret millar
Canada
Free Chrome Extension
Find emails, phones & company data instantly
Aero Online
Your AI prospecting assistant
Select data to include:
0 records × $0.02 per record
Download 750 million emails and 100 million phone numbers
Access emails and phone numbers of over 750 million business users. Instantly download verified profiles using 20+ filters, including location, job title, company, function, and industry.
Start your free trial