Sarcoidosis Research Institute
Vision
The Sarcoidosis Research Institute (SR) is recognized and respected internationally as an innovative and effective humanitarian organization committed to:
- Research into the causes, detection and cure of sarcoidosis, and
- Education of medical professionals (nurses, paramedical staff and medical practitioners), patients and the general public regarding sarcoidosis.
Sarcoidosis patients, their support networks and the public look to SRI as their
primary source of information and support. SRI serves a diverse group who share
the common goal of understanding and overcoming this disease.
SRI endeavors to:
- Provide patient and professional education that enhance existing methods of diagnosis and
treatment of the disease.
- Provide information that will assist patients and their support networks in the management of
the disease.
- Engage in research initiatives that will result in eradication of the debilitating disease,
sarcoidosis.
The objectives of SRI are to:
- Collaborate with research institutions to increase the volume and enhance the quality of
research initiatives in the area of sarcoidosis.
- Increase public awareness of sarcoidosis.
- Educate patients, patient support networks and medical professionals of
sarcoidosis.
SRI is governed by a twenty-three (3) member Board of Directors, Advisory Board and organizational By-Laws. Standing committees of SRI include:
- Executive
- Finance
- Nominating
- Development
- Public Relations
- Patient Services
- Professional Education
- Public Education
- Legislative
- Strategic Planning
- Volunteer
The President, Board of Directors and volunteers of SRI work diligently to
implement the goals and objectives outlined in SRI's strategic plan, all on a
volunteer basis.
Feeling tremendously overwhelmed, alone, frustrated and extremely ill, a sarcoidosis patient founded the Sarcoidosis Research Institute (SRI). SRI was chartered in the State of Tennessee in 1991.
SRI was designed to focus in the following areas:
- Promote research: It is a rare disease for which the origin and cure are unknown. Medical research will strive to reveal answers as to the cause, cure and detection of the disease.
- Dissemination of information: Educational literature is mailed to individuals requesting it to provide an understanding of and methods to better manage this mysterious disease.
- Provide support: SRI provides a network and a forum to provide open lines of
communication for sarcoidosis patients experiencing similar symptoms and
problems.
In order to meet the needs of its targeted population SRI offers public awareness,
patient services, patient and professional education and research programs.
Other Topics
Research
It is vitally important to increase research initiatives in the area
of sarcoidosis. If a cause and a cure for this disease are identified,
prevention and treatment logically follow.
Funding
Funding is necessary for research, patient and professional education.
Sarcoidosis is a complex disease; it is a tremendous help to patients to be
knowledgeable about the disease. They can have a better understanding of what is
going on with their bodies, and can communicate effectively with their medical
doctors. Psychologically, their ability to cope with and manage their disease is
greatly enhanced.
Professional education is critical in the care of sarcoidosis patients.
It is imperative that the medical community can identify the symptoms of the
disease and effectively treat the disease.
The dissemination of literature is extremely important to patients, families,
networks, medical professionals, employers and the public at large in understanding
this disease.
Conferences and forums are necessary for educational and patient networking
opportunities.
Some sarcoidosis patients have been terminated because of poor performance or
absenteeism. Employers need to be made aware of the symptoms of this disease.
Many sarcoidosis patients do not look ill. Before money can be raised for research,
education or anything else, the public must be made aware of this disease.
A program is needed to train and educate patients, families and care givers on how
to better manage and cope with this disease.
Can lifestyles be modified to better cope with this disease?
How to best educate patients of the legal process for filing for disability, and helping patients to
understand their rights and entitlements.
Create a director of resources
Join efforts where feasible
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Employer Education
Public Awareness
Care Givers
People taking care of sarcoidosis patients require a thorough
understanding of the disease, and what their loved one is experiencing
at the hands of this cruel disease. It is difficult for care givers to
comprehend what is going on, especially if the patient looks great,
and does not appear to be ill. It is also difficult for the care giver
to see their loved one suffer. At times, they will need a break.
Psychological Effects of the Disease
Dealing with sarcoidosis is a traumatic experience for patients and
their families. Psychological support is required. Patients try
desperately to cope with the disease. They feel ill, fear death, have
major changes in their physical makeup, endure dramatic changes in
their lifestyles, there is a significant change in relationships and a
tremendous fear of the unknown.
Management
Lifestyles
What impact does sarcoidosis have on one's lifestyle? What changes can
be expected?
Support
Many sarcoidosis patients have financial difficulties because they are
not able to work. Monies should be made available to patients
experiencing financial problems.
Patient Outreach
A network of patients who have the disease to provide support and
understanding to newly diagnosed patients.
Legal Issues/Social Security
How can sarcoidosis patients be treated fairly when submitting
applications for disability?
Health Insurance Issues
How can sarcoidosis patients be treated fairly when applying for
health insurance. Sarcoidosis is on the list of disease for denial for
health insurance.
Federal and State Legislation
Tax dollar should be allocated for the research and education efforts
of sarcoidosis organizations. Those dollars should indicate that
sarcoidosis is a bad thing, and is taken seriously.
Collaboration of Resources
Identification of resources available (newsletters, videos,
literature, support groups, conferences, medical doctors tips,
techniques, advice, etc..)