Lupus Foundation of America: Patients remain ‘at the heart of everything we do’

Sumary of Lupus Foundation of America: Patients remain ‘at the heart of everything we do’:

  • A complex autoimmune disease like lupus requires multi-pronged, multifactorial approaches for both individual patient management and for broader research and advocacy initiatives..
  • “We bring together top lupus experts in every arena to determine what is holding us back in lupus research and implement strategies to accelerate meaningful advancements in the field,”.
  • Adobe Stock “Since our founding more than 40 years ago, we have always employed a comprehensive approach toward ending the brutal impact of lupus,”.
  • Gibson, president and CEO of the Lupus Foundation of America, told Healio Rheumatology in an interview, adding that research is at the core of the group mission..
  • “Everything we do is driven by our mission to improve the quality of life for people with lupus through programs of research, education, and advocacy,”.
  • Since 1977, the Lupus Foundation of America has funded more than 400 lupus researchers at more than 100 medical institutions..
  • “Many of these researchers have gone on to attract millions of dollars from other public and private sources,”.
  • “Their landmark contributions to a better understanding of lupus have given people living with the disease an increased lifespan and improved the quality of life.”.
  • Filling the Research Pipeline The Lupus Foundation established the first national nonprofit research program dedicated exclusively to lupus at a time when there were few opportunities to fund lupus studies..
  • “We were early supporters of many of today lupus thought leaders, and the studies we funded have contributed to every lupus research breakthrough achieved during the past 40 years,”.
  • Identify the cause of lupus, discover better ways to control symptoms and find pathways to better treatments and a cure..
  • “To those ends, we bring together top lupus experts in every arena to determine what is holding us back in lupus research and implement strategies to accelerate meaningful advancements in the field,”.
  • Gibson highlighted the Addressing Lupus Pillars for Health Advancement (ALPHA) Project as one of the landmark research initiatives of the organization..
  • The goal of the first phase of the ALPHA Project is to identify the most significant challenges facing the lupus field and provide a global consensus on these issues..
  • Other research programs are investigating the potential use of stem cell research in the disease, and the parameters of lupus in children and teens..
  • The Lupus Foundation research initiatives have borne fruit in the diagnostic arena, and have led to the discovery of the Avise CTD (Exagen) diagnostic assay..
  • Fostering Connections An important mission of the Lupus Foundation is to provide sound information for doctors and patients..
  • The organization website lupus.org, is a good place to start, along with the National Resource Center for Lupus, the National Health Educator Network, the National Network of regional offices, chapters and support groups..
  • These groups provide information, conduct education programs, and coordinate outreach programs for people affected by lupus..
  • Medicine, a global, peer reviewed, open access online journal, is intended to help physicians stay current on developments in basic, clinical, translational and epidemiological research, according to Gibson..
  • “Our online community, LupusConnect, lets people with lupus engage with others like them to share experiences, find emotional support and discuss ways to cope with the daily challenges of the disease,”.
  • “Inside Lupus Research is our consumer-facing news bureau that summarizes important reports from all the leading lupus research publications,”.
  • Advocacy and Unity The National Lupus Foundation advocacy program runs year-round, having granted more than $550 million for research in the last 5 years alone..
  • “These efforts are supported by our national network of lupus advocates, representing every state, who are a strong voice for people affected by lupus,”.
  • The yearly National Lupus Advocacy Summit is attended by more than 350 people, including patients, physician- scientists, and representatives of other nonprofit organizations with an interest in lupus..
  • “This helps support more funding for lupus research and programs that can improve the lives of those impacted by the disease.”.
  • The Medicare Access for Patients Rx Coalition at the heart of the Lupus Foundation goal of providing access to medications for all patients with lupus..
  • “We also work with federal agencies, such as the CDC and FDA, to understand the impact of lupus on different populations at greatest risk for lupus, overcome regulatory hurdles to lupus drug development, and incorporate patient perspectives in the drug development and approval process,”.
  • Significant Achievements The first and only national childhood lupus research program was established by the Lupus Foundation..
  • “This is important because in children, lupus tends to be more aggressive and severe than it is in adults,”.
  • “We recognized these challenges and in 2006 established the Michael Jon Barlin Pediatric Lupus Research Program..
  • This program supports discoveries for lupus kidney disease, neuropsychiatric lupus, health-related quality of life, and development of drugs specifically for children and teens with lupus.”.
  • On the advocacy front, the Lupus Foundation have secured nearly $65 million to establish and fund the National Lupus Patient Registries at the CDC, which has provided insight into the impact of lupus on populations at greatest risk for developing lupus…

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