Patient Commitment | Primary Immunodeficiency (PI) Commitment

JMF

The Jeffrey Modell Foundation (JMF) is dedicated to awareness, early diagnosis, treatments, and eventual cures of PI diseases. Fred and Vicki Modell established the JMF Foundation in memory of their son Jeffrey, who died at age 15 of pneumonia due to an underlying PI disease.

JMF Support Highlights

• JMF Diagnostic and Research Centers Worldwide
• Jeffrey Modell Immunology Center at Harvard

back to top

IDF

The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving diagnosis, treatment, and quality of life for individuals with PIs through advocacy, education, and research.

In the United States, there are approximately 250,000 people diagnosed with PI. Thousands more go undetected. These individuals often find it difficult to receive specialized health care, proper diagnosis, and treatment. They also experience difficulties financing their health care, finding educational materials on their disease, and locating others with whom to share their experiences. The mission of IDF is to help individuals overcome these difficulties and live a healthy and productive life. The presence of IDF assures patients, their families, and their medical caretakers that there is a place to turn for help. To learn more about IDF, visit www.primaryimmune.org.

IDF Support Highlights

• Direct services to individuals and families
  • Patient advocacy programs
  • IDF volunteer network
  • Patient and family education meetings
  • Youth program
  • Educational and awareness materials including the IDF Patient & Family Handbook For Primary Immunodeficiency Diseases
• Medical and scientific programs
  • Consulting Immunologist program
  • Visiting Professor program
  • Medical meetings and exhibits
• Public policy
  • Access to quality healthcare
  • National and state-level advocacy
  • Grassroots advocacy network
• Survey research

back to top

IPOPI

International Patient Organisation for Primary Immunodeficiencies (IPOPI) is working to improve access to early diagnosis, optimal treatment, and care. The organization also works to establish new national member PI organizations and acts as the global voice for its member PI organizations.

IPOPI Support Highlights

• EU Consensus Conference on Primary Immunodeficiency Paul Ehrlich Institute, Langen, Germany June 19-20, 2006

  Baxter was a diamond sponsor for this conference and supported IPOPI and the European Commission in this endeavor. In order to further address PI as a public health issue, the European Commission is driving several initiatives and recommendations.

  Consensus Conference goals are to
  • Help create awareness within EU governments of the negative impact PIs currently have on their healthcare systems and undiagnosed patients.
  • Show the varying standards of care and treatment that exist for people with PIs across the EU.
  • Formulate a plan of action and short-term actions that member state governments can take to help reduce the burden of PIs.

back to top

ESID

Baxter provides funding for the European Society for Immunodeficiencies (ESID), which is a non-profit organization having multiple aims. The main objectives are to facilitate the exchange of ideas and information among doctors, nurses, biomedical investigators, patients and their families concerned with PI diseases, and also to promote research on causes, mechanisms and treatment of these disorders.

ESID support highlights

• Patient registry. The goals of the registry are to:
  • Collect clinical data of patients with PIs
  • Improve diagnosis
  • Enhance classification
  • Improve prognosis
  • Optimize therapy
  • Compile long-term data on PIs
  • Further genetic and therapeutic trials within ESID

back to top