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Rare Disease Initiative Will Tackle Awareness and Treatment Access Challenges
News provided byAlliance for Patient Access
Jan 25, 2023, 11:26 AM ET
Policy-minded health care providers band together to support patients with rare, chronic condition called IgG4-RD
WASHINGTON, Jan. 25, 2023 /PRNewswire/ -- A new initiative from the nonprofit Alliance for Patient Access brings together clinicians from across the country to identify unmet needs and to improve treatment access for patients living with IgG4-RD. The rare and chronic autoimmune disease is sometimes associated with type 1 autoimmune pancreatitis.
The group will work to provide solutions to access challenges and to raise awareness, in addition to encouraging treatment research and innovation.
"Facing a disease that few people have ever even heard of can be isolating and scary," said Josie Cooper, executive director of the Alliance for Patient Access. "The clinician members of the IgG4-RD Initiative are committed to supporting patients through education and advocacy."
The Alliance for Patient Access released a "Fast Facts," an educational Q&A document, to coincide with the IgG4-RD initiative launch. The paper provides introductory information on the disease for patients as well as for providers for whom the disease may be unfamiliar.
IgG4-RD is a rare and chronic autoimmune disease. Symptoms vary and may include: brain fog, double vision, fatigue, severe body or eye pain, and sinus pressure. Patients are often treated by a rheumatologist.
Because IgG4-RD was discovered only recently, there isn't yet an FDA-approved treatment for the condition, though options may be on the horizon.
Fast Facts: Understanding IgG4-RD
Report: In their Own Voices – The Lived Experiences of IgG4-RD Patients
Report: In their Own Voices, 2022 Update
About the Alliance for Patient Access
The Alliance for Patient Access is a national network of policy-minded health care providers who advocate for patient-centered care.
About the Alliance for Patient Access Rare Diseases Working Group
The Rare Diseases Working Group is comprised of policy-minded health care professionals focused on ensuring that rare disease patients have appropriate access to patient-centered care.
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SOURCE Alliance for Patient Access