By Rashmin Gandhi, MD

Editor’s Note: Dr. Rashmin Gandhi spoke on behalf of Sankara Nethralaya at the program on January 9 in Chennai, India, announcing the Global Pseudoxanthoma Elasticum Foundation. The purpose of this foundation is to support the Pseudoxanthoma Elasticum research program initiated at Sankara Nethralaya. This eye care center has identified in its records over 170 patients who have PXE. These patients will be contacted for possible genetic study and counseling. As well, patients identified currently and in the future who present angioid streaks will be tested for PXE, and if so identified, they will be invited to participate in the study and will receive counseling regarding the inheritance and care for this disorder. These patients will be followed for as long as they need help, and the results of the study will provide information to be used by the genetics team at Sankara Nethralaya in collaboration with Dr. Berthold Struk.

Dr. Rashmin Gandhi

Dr. Gandhi, a cataract specialist, met with NAPE for its Atlanta conference. Those present will recall conversations with him about PXE and other vision issues. Following is the text of Dr. Gandhi’s report.

Global PXE Foundation (GPF)

For Clinical Care And Research

GPF is a non-profit global organization committed to enhancing the awareness, clinical care, and research toward helping PXE patients worldwide.

MISSION STATEMENT

Our mission is to bring together expertise and influence of eminent individuals within the private and public sector domain to work synergistically for the common good of PXE patients.

ROLES

·        Foster educational activities, basic science/clinical research and care toward helping
     the PXE patient population worldwide. 

·        Promote communication among the public, patient population and clinicians about
     available diagnostic and treatment options.

·        Create and maintain a database comprised of symptoms, diagnostic tools, treatment
     options, and clinical outcomes of PXE patients worldwide

·        Disseminate scientific knowledge about PXE through symposia, publications and other
     electronic and print media

·        Assist PXE associations at regional, national and international levels in identification of
     various treatment options for the care and well being of PXE patients

 OBJECTIVES

·        Create awareness within public and private sectors about PXE

·        Help policy makers globally to invest resources for developing new clinical modalities
     and treatment options

·        Establish consortia incorporating active clinical and basic sciences research groups

SCHOLARSHIP

GPF will provide scholarship and training activities for medical students/scientists with interests in PXE clinical and basic sciences research every year. 

Scholarship name will be decided by the Board of GPF.

ANNUAL AWARD

GPF will administer an annual award recognizing excellence in clinical care and basic sciences research that directly impact care and treatment of PXE patients. 

Annual award name will be decided by the Board of GPF.