Mae'r adroddiad gan yr elusen wedi'i ddiweddaru (ar amser)
Dogfen lywodraethu
Manylion am y math o ddogfen lywodraethu sydd gan yr elusen a phan y'i sefydlwyd. Nid dyma destun llawn dogfen lywodraethu'r elusen.
CIO - FOUNDATION Registered 15 Feb 2018
Gwrthrychau elusennol
1) THE RELIEF OF SICKNESS AND THE PRESERVATION AND PROMOTION OF GOOD HEALTH AMONG PEOPLE SUFFERING FROM EHLERS DANLOS SYNDROMES, COMORBIDITIES AND RELATED CONDITIONS IN PARTICULAR BUT NOT EXCLUSIVELY BY:
A) PROVIDING INFORMATION AND GRANTS OF FINANCIAL ASSISTANCE TO THOSE DIAGNOSED WITH SUCH CONDITIONS, AND THOSE SEEKING A DIAGNOSIS.
B) PROVIDING GRANTS OF FINANCIAL ASSISTANCE TO ORGANISATIONS UNDERTAKING RESEARCH INTO EHLERS DANLOS SYNDROMES, COMORBIDITIES AND RELATED CONDITIONS, THE USEFUL RESULTS OF WHICH WILL BE DISSEMINATED FOR THE PUBLIC BENEFIT.
2) TO ADVANCE THE EDUCATION OF THE PUBLIC IN EHLERS DANLOS SYNDROMES, COMORBIDITIES AND RELATED CONDITIONS IN PARTICULAR BUT NOT EXCLUSIVELY BY PROVIDING INFORMATIVE TALKS DESIGNED TO RAISE AWARENESS AND FURTHER KNOWLEDGE OF THE CONDITIONS AMONG THE MEDICAL PROFESSION.
FOR THE PURPOSES OF THIS CLAUSE:
EHLERS-DANLOS SYNDROMES (EDS) ARE A GROUP OF RARE INHERITED CONDITIONS THAT AFFECT CONNECTIVE TISSUE. CONNECTIVE TISSUES PROVIDE SUPPORT IN SKIN, TENDONS, LIGAMENTS, BLOOD VESSELS, INTERNAL ORGANS AND BONES. THERE ARE THIRTEEN DIFFERENT TYPES OF EDS THAT MAY SHARE SOME SYMPTOMS, INCLUDING: AN INCREASED RANGE OF JOINT MOVEMENT, STRETCHY SKIN, FRAGILE SKIN THAT BREAKS OR BRUISES EASILY. THE DIFFERENT TYPES OF EDS ARE CAUSED BY FAULTS IN CERTAIN GENES THAT MAKE CONNECTIVE TISSUE WEAKER. DEPENDING ON THE TYPE OF EDS, THE FAULTY GENE MAY HAVE BEEN INHERITED FROM ONE PARENT, OR BOTH PARENTS. SOMETIMES THE FAULTY GENE ISN'T INHERITED, BUT OCCURS IN THE PERSON FOR THE FIRST TIME. EDS CAN AFFECT PEOPLE IN DIFFERENT WAYS. FOR SOME, THE CONDITION IS RELATIVELY MILD, WHILE FOR OTHERS THEIR SYMPTOMS CAN BE DISABLING AND LIFE-THREATENING.
COMORBIDITIES AND RELATED CONDITIONS INCLUDE: AUTONOMIC NERVOUS SYSTEM DISORDERS; CARDIOVASCULAR DYSAUTONOMIA; FUNCTIONAL GASTROINTESTINAL DISORDERS; IMMUNE SYSTEM DYSREGULATION; EXOCRINE GLAND DYSFUNCTION; MAST CELL ACTIVATION DISORDER; MUSCULOSKELETAL SYSTEM DISORDERS; SKIN AND MUCOSA DISORDERS; NERVOUS SYSTEM DISORDERS; GYNAECOLOGICAL DISORDERS; CHRONIC FATIGUE SYNDROME; CHRONIC PAIN SYNDROME AND PSYCHIATRIC DISORDERS.
