Advocacy & Awareness for Immune Disorders Association (AAIDA)

AAIDA’s next educational webinar: June 23rd, 6:00-7:00 pm EST: “Chronic Illness 101: A Young Adult Patient Perspective”

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Webinars

Chronic Illness 101: A Young Adult Patient Perspective

June 23rd, 2021 6:00-7:00pm EST

AAIDA will host patient advocate and University of South Carolina (USC) junior, Jessica Goddard, for our 8th patient educational webinar for 2021.

Jessica will discuss the following during her presentation:

  • Path to diagnosis
  • Access to care
  • Positives experiences she has gained as a result of her journey
  • Living as a college student with a Rare Disease during the COVID-19 Pandemic

Jessica Goddard is a student at the University of South Carolina (USC) Honors College pursuing a Bachelor’s of Science in Public Health and a minor in Business Administration. She is a member of and holds leadership in Alpha Epsilon Delta Pre-Professional Health Honor Society and Sigma Omega Upsilon International Business Fraternity on campus at USC. She is also highly involved with the Immune Deficiency Foundation (IDF) as a volunteer, advocate, and lobbyist and serves on the coalition to assemble a NORD Rare Disease Advisory Council in South Carolina. In January 2020, she was published by The State newspaper for her op-ed titled “South Carolina Universities and Colleges Must Do More to Get Students Vaccinated”. Jessica’s ultimate goal as a rare disease advocate is to bring hope and positivity to those going through their rare disease journeys.

Following her presentation, Jessica will conduct a live 15 minute Q&A session with attendees.

Hereditary Angioedema: Triumphs of Medical Progress

July 14th, 2021, 7:00-8:00pm EST

AAIDA will host Doug Johnston, DO, FACAAI, FAAAAI, of Charlotte N.C,  for our 9th educational webinar during 2021.

Dr. Johnston will discuss the following during his presentation:

  • Understanding the mechanism of swelling in Hereditary Angioedema (HAE)
  • Review the burden of illness in patients with HAE 
  • Discuss current treatment options 

Douglas T. Johnston is an allergist/clinical immunologist at Carolina Asthma & Allergy Center in Charlotte, N.C and an Assistant Professor at Edward Via School of Osteopathic Medicine in Spartanburg, S.C. Dr. Johnston received his medical degree from the New York College of Osteopathic Medicine in Old Westbury, N.Y and  completed his residency in internal medicine at NYU Long Island Hospital (formerly Winthrop University Hospital) in Mineola, N.Y. Dr. Johnston then completed a fellowship in allergy/immunology at the University of Alabama at Birmingham.

Dr. Johnston has served as chair of the Allergic Skin Disease Committee and is the current chair of the Urticaria/Angioedema subcommittee of the AAAAI. He has served as a principal investigator for many HAE therapeutics used today and an author of over 50 publications on angioedema. He has been activity involved with the education of children with HAE in collaboration with the HAEA and continues to learn from his patients each day.

Following his presentation, Dr. Johnston will conduct a live 15 minute Q&A session with attendees

Sjogren’s Syndrome: It’s Not Just Dry Eyes and Dry Mouth

May 21st, 2021

AAIDA hosted rheumatologist, Delfin Santos, MD, FACR, of Rochester Hills, MI for our 7th educational webinar during 2021.

Dr. Santos will discuss the following during his presentation:

  • Describe commonly associated conditions
  • Identify laboratory tests and findings
  • List treatment strategies including drug therapy and lifestyle

Dr. Del Santos, has been in private practice for 29 years and currently serves as Director of AARA Rochester Rheumatology Center in Rochester Hills, MI. Dr. Santos earned his medical degree from UCMM in Santiago, Dominican Republic and completed his Internal Medicine Residency Program at West Suburban Hospital Medical Center in Oak Park, IL. Dr. Santos completed his Fellowship in Rheumatology at Rush Presbyterian St. Luke’s Medical Center in Chicago, IL and served as Chief of the Department of Medicine and as Vice Chief of Staff at Ascension Hospital Medical Center in Rochester Hills MI.  Dr. Santos has also been on the Advisory Board for the American Behcet’s Disease Association for the last 20 years and is repeatedly named TOP DOC in rheumatology in HOUR Magazine Detroit.

Following his presentation, Dr. Santos will conduct a live 15 minute Q&A session with attendees

Liquid Gold: An Open Forum On IVIG: (Part II of II)

May 13th, 2021

Speciality pharmacist and patient advocate, Michael Rigas, PharmD, will continue to dive deeper into discussion topics regarding IVIG/SCIG issues that were not covered in Part I of this educational webinar series

Dr. Rigas will discuss the following:

  • Discuss the physician referral and onboarding process with an IVIG pharmacy company
  • Discuss how to make IVIG more affordable for the patient
  • Discuss the economics of IVIG in the eyes of the FDA, the drug maker and the insurance company
  • Discuss how to maximize the Clinical outcome and your experience with IVIG

 

Dr. Rigas is the Chief Clinical Officer, co-founder and principal at KabaFusion, an infusion therapy company dedicated to managing IVIG and other chronic and acute therapies nationwide. Prior to joining KabaFusion, Dr. Rigas was Associate Chief Innovation Officer for Pharmaceutical Care for Geisinger Health System and Chief Clinical Officer for VITALine CareSite Pharmacy Services.

Dr. Rigas graduated from USC School of Pharmacy with his Pharm.D. degree and completed his residency at UC San Francisco Hospitals and Clinics in 1982. His areas of expertise include antimicrobial therapy, immunoglobulin therapies (IVIG), nutritional support, inotropic therapies and many others.

Over the last 20 years, Dr. Rigas has managed or overseen the care of over 15,000 patients who have received over 20,000,000 grams of IVIG.

This presentation is an open forum event. Attendees can interact with Dr. Rigas and ask any questions they may have. This webinar will also be recorded live on May 13th and made available as a resource for patients on the AAIDA website soon after.

Liquid Gold: An Open Forum On IVIG (Part I of II)

April 28th, 2021

AAIDA hosted speciality pharmacist, Michael Rigas, PharmD, for our 5th educational webinar and first “forum” event of 2021.

Dr. Rigas will discuss the following during his presentation:

  • What is IVIG and how is it made
  • What diseases can IVIG be used to treat and what responses and side effects are expected
  • What IVIG products are available Currently and what are their characteristics

Dr. Rigas is the Chief Clinical Officer, co-founder and principal at KabaFusion, an infusion therapy company dedicated to managing IVIG and other chronic and acute therapies nationwide. Prior to joining KabaFusion, Dr. Rigas was Associate Chief Innovation Officer for Pharmaceutical Care for Geisinger Health System and Chief Clinical Officer for VITALine CareSite Pharmacy Services.

Dr. Rigas graduated from USC School of Pharmacy with his Pharm.D. degree and completed his residency at UC San Francisco Hospitals and Clinics in 1982. His areas of expertise include antimicrobial therapy, immunoglobulin therapies (IVIG), nutritional support, inotropic therapies and many others.

Dr. Rigas has worked on standardized coding for infusion billing, universal access via patient assistance plans and managing Medicare Part D issues in front of the California board of pharmacy and CMS regional managers. Dr. Rigas is a member of the American Society of Hospital Pharmacists, the National Home Infusion association, the American Academy of Neurology and the Clinical Immunology Society.

Over the last 20 years, Dr. Rigas has managed or overseen the care of over 15,000 patients who have received over 20,000,000 grams of IVIG.