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About The Foundation

View our tax exempt status paperwork here

Top (from left to right): Charlie Hunt, Rosalind Hunt, Vincie DiLorenzo, and Carmen DiLorenzo. Bottom (from left to right): Paul DiLorenzo, Melissa DiLorenzo, and Patricia Saia

Mission Statement
The Thalassemia Support Foundation is a non-profit organization founded by patients, parents, loved ones, and friends affected by Thalassemia.  The foundation provides hope, comfort and encouragement to those battling this disorder. At the heart of the organization is a strong desire to help improve the quality of life for all patients with Thalassemia.  We volunteer our time to organize conferences, raise funds to educate the community, ensure patients and parents know the latest in care, and donate to the work of researchers.  The foundation maintains a strong relationship with the medical community that provides diagnoses, treatment and care.
Purpose of Organization
Support 

  1. To help Thalassemia patients and parents understand the disease and the actions around improving the quality of life and finding a cure.
  2. To ensure patients and parents have access to doctors and information that will allow them to be advocates for their needs.
  3. Provide Standards of Care Booklet to parents and patients.
  4. Provide funds for patients to receive initial examination by expert doctors at one of the Thalassemia Centers.
  5. Build and maintain a database of Thalassemia patients and parents.
  6. Organize annual conference in at risk communities to provide updated information on Thalassemia.
  7. Organize, facilitate, and participate in community based events throughout the year.
  8. To provide a support system among the thalassemia community (patients, parents, friends, etc.), so that people can get into contact with other people.
  9. Have fun.

Medical Relationship 

  1. Build and maintain a close relationships with primary Thalassemia Centers and staffs.
  2. Encourage doctors who specialize in thalassemia to consult and advise the medical community so that every patient receives the highest quality of care.
  3. Facilitate events for doctors to share information about the treatment of Thalassemia.
  4. Support Thalassemia events at Thalassemia Centers.

Research Support 

  1. Support Research for improving treatment, diagnosis and cure of Thalassemia.

Activist 

  1. Advocate / Lobby for Thalassemia causes to affect changes in state laws and support.
  2. Have a clear channel of communications to patients, medical community, and general public about the affects of the disease.
  3. Connect with the State of California for information on Newborn Screening and assist with information flow to patients for their knowledge and care.