February 28, 2023
Elevating Awareness of Rare Diseases;
Past, Present & Future
March 2nd, 4:00-5:00 ET
AAIDA is excited to host Simu Thomas, Ph.D, of Alexion Pharmaceuticals and Shelby Harrington, RN, of Avalere, for our 2nd educational webinar during Rare Disease Week, 2023.

Simu and Shelby will discuss the following:

  • Advancements in health technology assessments (HTA’s) that evaluate and bridge patient research, health insurance companies and government policies to foster rare disease drug development and availability
  • Review the impact and missed opportunities to expand awareness of rare diseases
  • Discuss new approaches with HTA’s that help address indirect cost for rare disease patients such as productivity and loss of wages and family and caregiver impacts
  • Learn ways patients can advocate for themselves with state and local government agencies and officials

Following their presentation Shelby and Simu will conduct a live 15 minute Q& A session with attendees. This webinar will be recorded live and made available on the AAIDA website and YouTube channels for our community.
AAIDA Presents Problem Based Learning For Physicians in
San Antonio, TX
AAIDA hosted our first Problem Based Learning (PBL) for physicians in San Antonio, TX prior to the AAAAI Annual Meeting on February 23rd. During this educational initiative, physicians learned about complex immunodeficiency and overlapping conditions that can be present in patients they encounter in their practice. Thank you to our PBL Event Sponsors: Takeda, Grifols and GAAPP for your support for this program.
February 28th is Rare Disease Day &
March is Autoimmune Awareness Month
Chances are you know someone who is living with an autoimmune disease. Approximately 50 million Americans have been diagnosed with at least one autoimmune disease. During Autoimmune Awareness Month, AAIDA would like to help raise awareness for these conditions. Awareness is critical to advancing research and improving care for people affected by autoimmune disease.

Rare Disease Day helps bring awareness to the 300 million people living with rare conditions around the world. There are +7000 rare diseases and 72% are genetic in nature, while only a fraction of those have a treatment available. Get involved with this important day by visiting www.RareDiseaseDay.org

New Study On Health Insurance Plans
Three out of four health insurance plans scored a “C” or an “F” for treatment accessibility for patients. See how your plan compares.
wAIHA To Hold First Patient Conference,
March 24-26 in NoLa
Join our friends at Warm Autoimmune Hemolytic Anemia (wAIHA) Warriors in New Orleans for the first wAIHA Warriors Annual Meeting, March 24-26. Patients, caregivers, physicians and researchers will gather in New Orleans to discuss current and future treatments, access to care, Federal and State advocacy efforts and more. Most importantly, the Annual Meeting will allow patients to network and share their stories with other members of the community.
CSL Behring Offers Co-Pay Assistance For IVIG Drug, Privigen, In 2023
As of January 3, 2023, CSL Behring began offering a copay assistance program to patients for their intravenous immunoglobulin (IVIG) drug, Privigen. Privigen is one of eleven IVIG products that is FDA approved to treat seven rare conditions.
Thank You To Our 2023
Corporate Partners & Event Sponsors
Corporate Partner
Event Sponsors:
Nonprofit Partners

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