 |
| What is SDSF? |
| Our History |
| Founded in 1994 by Joan Mowery, the mother of an SDS child, Shwachman-Diamond
Syndrome Foundation is a national, nonprofit, patient advocacy organization. Our goals are to advocate and support research towards a cure and to
improve medical management of symptoms, as well as to link families
for emotional support and supply them with the most current medical
information available. This information is provided with the expertise and
cooperation of our professional medical advisory board. |
| |
| Our Mission |
 |
Advocate and support research towards a cure and
improve medical management of symptoms |
|
Educate the medical community and general public about Shwachman-Diamond
Syndrome |
|
Provide emotional support to patients and their families |
|
Link families through medical/family conferences to share
experiences and ideas |
|
Disseminate current medical information |
|
Support an International and National Patient Registry and
International Medical Conferences |
| |
|
| For a synopsis
of our work to-date, see Get
Involved - Host a Fundraiser |
|
| |
| Our Budget |
| SDSF spends approximately 75% of its budget on research,
and the the remaining 25% on family support, conferences (scientific
and family, administrative, insurance, payroll and fundraising. |
|
 |
 |
