| Objective |
Inputs |
Activities
|
Outputs |
Initial
outcomes |
Intermediate
outcomes |
Longer-term
outcomes |
| Spread awareness
CFW website
CFW Newsletter |
Staff time
Server space
Staff time
Mailing and production costs |
Create a platform for the exchange of information
via the CFW website forums
Develop the CF India web pages on the CFW site to
offer Indian related CF information
Developing a mailing list of CF parents
and caregivers in India |
A communication portal for parents and medical professionals
which will offer contact to CF specialist internationally
The CFW Newsletter delivered to clinics,
hospitals and patient homes |
Possibility to improve treatment methods, identify
the disease and spread awareness about CF
|
Patients are diagnosed in an early stage of CF as
clinical signs are more rapidly recognized and important treatment information
such as diet, use of pancreatic enzymes, physiotherapy is readily available |
Quality of Life (QoL) of the patient improves |
Educating
Medical Professionals
Staff of ICFPWA, BOD |
Trainers, money, equipment, AIIMS, CFW Educational
Grant Program
Solidarity fund,
|
Education of medical professionals by offering sub
grants to train at the AIIMS with Dr Kabra
A ICFPWA Project Manager or staff
personal will visit a CFW developed CF Association for a period of 2 to
3 weeks for training |
The medical staff is educated in CF treatment and
a standard for CF Care in India
is established
An Indian ICFPWA Project Manger is trained to govern, develop by-laws
and able to understand fundraising, grant writing and general program
fundamentals |
Knowledge about CF (symptoms, diagnosis, treatment)
increases among the medical staff through out India
A full time, trained project manager able to develop, implement and sustain
concrete projects |
Medical staff is more capable of diagnosing and treating
CF patient and can adopt a standard of care for CF in their local hospitals
and clinics
Patients begin to have new resources such specialized clinics, diagnostics,
medication |
Condition of patients improves, QoL improves |
| India CF Registry
Initiate and support the development of a CF Registry |
Staff, money, computer |
Establishment of CF database to keep a registration
of all the CF patients |
Registration of the patients (diagnostics, Epidemiology,
genotypes, condition, growth, etc.) |
Ability to monitor the course of CF within every patient;
overview of all the patients |
Treatment can be tailored to the course of the disease;
data of CF in India becomes available |
Improved care for CF patients in India |
Participatory Planning
By Laws
Governing
Board Development
Logistics |
Staff time, sub-grants, Indian parents of CF patients, doctors and concerned community
members
Sub Grants
Networking with stakeholders, sub grants |
Work to develop ICFPWA infrastructure by assisting
to hire and train a New Delhi
based Project Manager and supporting his/her salary costs during the capacity
building phase
The project manager should work closely with a legal representative
in developing all governing policies and by-laws
Support the establishment of a ICFPWA headquarters in New
Delhi with phone, fax, internet an Association
bank account, seal etc. |
Paid staff able to develop a basic infrastructure
for a well governed and focused CF member Association in India
Organizational infrastructure, by-laws and governing
policies
An established headquarters for ICFPWA to operate all activities.
A legal and financial presence is established in New Delhi |
An association is operating and able to develop concrete
projects focused on improving patients lives are realized and sustained |
Standards of care in India increase and access to necessary
specialists, medication and treatment methods open |
QoL of the patients and their families increases |
| Networking with local NGO’s
|
AIIMS contacts, staff time |
Through the network of chronic disease contacts at
the AIIMS relationships should be fostered with other NGO’s battling chronic
disease i.e. chronic pancreatitis, asthma, diabetes, TB and
malaria |
A “power in numbers” collaborative effort to reach
chronically ill patients and develop chronic disease management modules
that will offer sustainable improvements to the delivery of care services
|
Cystic fibrosis is recognized by the Health care community
and ICFPWA has a developed network
to aid in advocating at community, government and international levels
for CF patients |
More CF patients are correctly diagnosed and treated
effectively. Access to government funding and support opens
|
Life expectancy of patients increase; QoL patients
and families increase in the more economically challenged families |
| Expand Contacts and links
|
Staff time, CFW BOD and member association/partner
time |
Establish contacts and links to the international
CF community as a means to establish beneficial relationships for ICFPWA
and various stakeholders |
Developed contacts that will strengthen and support
the mission and vision of ICFPWA |
TBD |
TBD |
TBD |
| Develop Sustainability |
Staff, money, Advisors |
Build relationships between ICFPWA and Indian based
fundraising consultant for training,
case studies, fundraising/marketing analysis, approach, methods and planning |
A 5 year strategic fundraising plan is developed and
income generating programs are established |
Income to support projects to improve QoL for CF patients
is available |
Patients have increased access to trained specialists,
necessary equipment and medication |
Life expectancy of CF patients throughout India increases;
QoL patients and families increase |
Evaluation
|
An Outcomes, Process and Budgetary Evaluation program will be developed
at the inception of CFW’s involvement in India. The evaluation will be conducted throughout
the life of the program and for one year after CFW has stopped supporting
programs in India.
This evaluation will be a continued resource for implementing similar
projects in developing countries worldwide.
The evaluations will determine the following:
Develop methods for strengthening existing services
·
Target effective services for expansion
·
Identify staff and volunteer training needs
·
Develop and justify budgets
·
Prepare long-range plan
·
Focus the ICFPWA
Board of Directors and the Parents and Medical professionals attention
on programmatic areas and program achievements and value |
Provide measurable outcomes of improved QoL for patients
and families |