Aims
The Foundation aims to provide a service to alleviate poverty and a self help group (education and support) for individuals affected by Majewski Osteodysplastic Primordial Dwarfism Type II, their parents/carers, siblings and the general public.
The Charity will strive to achieve the following aims for individuals affected by Majewski Osteodysplastic Primordial Dwarfism Type II:
Facilitate Opportunities to Meet
Including but not limited to the following:
- Assisting individuals and their families affected by Majewski Osteodysplastic Primordial Dwarfism Type II with annual membership costs for joining the numerous associations associated with Dwarfism (i.e. Restricted Growth Association, Child Growth Foundation, Little People of America)
- Assisting individuals and their families affected by Majewski Osteodysplastic Primordial Dwarfism Type II with travel and accommodation expenses to the numerous annual conventions (i.e. Restricted Growth Association, Child Growth Foundation Little People of America and Walking With Giants)
- Assisting individuals and their families affected by Majewski Osteodysplastic Primordial Dwarfism Type II with travel and accommodation expenses to a quarterly Walking With Giants Family Support Weekend
- Provide family retreats exclusive to individuals and their families affected by Majewski Osteodysplastic Primordial Dwarfism Type II
Provide for Adaptive and Medical needs
Including but not limited to the following:
- Assistance for family medical and dental expense outside of the coverage of NHS provisions and services
- Assistance with expenses for adaptive equipment needed for the home, vehicle, or school outside of NHS provisions, services and State benefits
- Assistance with travel, accommodation and medical expenses for medical care outside of the UK (if necessary)
Facilitate Education and Awareness
Including but not limited to the following:
- Provide support and education to families of individuals with Majewski Osteodysplastic Primordial Dwarfism Type II
- Provide education literature to schools, the general public and mankind
- Provide education to Hospitals and Medical Institutes
Research and Physician Support
Research
The Foundation will strive to facilitate research to:
- Promote, encourage or undertake organised research into matters related to Majewski Osteodysplastic Primordial Dwarfism Type II and associated syndromes of Primordial Dwarfism and to disseminate such research anywhere in the world.
Physician Support
The Charity will strive to facilitate a Medical Advisory Board to:
- Review any individual deemed to be affected by Majewski Osteodysplastic Primordial Dwarfism Type II
- Liaise with the Local National Health Trusts so that an individuals diagnosed with Majewski Osteodysplastic Primordial Dwarfism Type II obtains the right support and treatment.