| Syndromes
and Conditions |
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If you can
help please contact National Office 0508 236 236 or email us at national@parent2parent.org.nz |
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| ACUTE DISSEMINATED ENCEPHALOMYELITIS: | The mother of a 16 year old girl would like to talk to a parent who has had a child affected by this sudden illness to discuss the outcomes when the brain has been extensively affected. Ref 4577 | |
| ARTIFICIAL EYE & BRAIN HAEMORRHAGE: | The mother of an eleven month old child would like to speak with another parent who has a child who has lost an eye and had a brain haemorrhage to discuss experiences and progress. Ref 2984. | |
| BI-LATERAL HIP DYSPLASIA SURGERY: | The family of an 18 year old would like to speak with another family who have a family member who has had this surgery to discuss the procedure and recovery period. Ref 4043 | |
| CATATONIA: | The family of a 16 year old would like to speak with another parent who has a family member with this condition. Their concerns are with the changes in behaviour and the different stages that affect the function to perform usual daily functions. Ref 3522 | |
| CERVICAL TERATOMA: | The
mother of a young baby would like to speak to another parent whose child
has this rare congenital condition. Ref 4946 |
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| CHROMOSOME DELETION 9Q34.3: | The family of a 12 year old son with the rare chromosome deletion would like to have contact with another family who has a child with this condition. Ref 4754 | |
| COHEN SYNDROME: | The parents of two young adults with this syndrome would like to make contact with other families that are affected by this syndrome with the view to forming a New Zealand support group.Ref 4728 | |
| CUTIS MARMORATA TELANGIECTATICA CONGENITA (CMTC): | A rare condition that mainly affects the blood vessels of the skin. It looks like a purple, marble-like pattern on the surface of the skin. Our parent would like to speak with another parent who has a child with this condition. Ref 3295 | |
| JEJUNAL ATRESIA TYPE 3B (also known as DUODENAL ATRESIA, CHRISTMAS TREE ATRESIA and APPLE-PEEL DEFORMITY): | The mother of a six month old child would like to speak with another family who has a child with this condition. Ref 3456 | |
| FANCONI’S ANEMIA: | The
mother of an 11 year old son would like to speak with another parent whose
child has this same condition. Ref 4515 |
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| FOCAL SEGMENTAL GLOMERULOSCLEROSIS: | Is a type of Glomerular Disease that affects kidney function by attacking the tiny units within the kidney where blood is cleaned. Our family would like contact with another parent who has a child with this condition. Ref 2176 | |
| FRIEDREICHS ATAXIA: | The mother of a child with this condition would like to have contact with another family who have a child with this condition. Ref 3777 | |
| HAEMOPHILIA: | The mother of a one year old child would like to have contact with other families who have a child of similar age with this condition. Ref 3173 | |
| HYPOPHOSPHATASIA: | The mother of a seven year old child would like to speak with another parent whose child has this condition to discuss this condition in general and how it affects development. Ref 4674 | |
| ICHTHYOSIS: | The mother of a young child would like to have contact with another parent whose child has this condition. Ref 3625 | |
| MACROCEPHALY: | The mother of a nine year old child would like to speak with another family that has a child with this condition and behaviour problems. Ref 3021. | |
| MEDICATION FUNDING: | The mother of a child whose medication is non government funded would like to talk to other families that have been in a similar situation about how to gain access to resources for funding of medications. Ref 2432 | |
| MOYAMOYA DISEASE: | The family of this extremely rare disorder would like to speak with another parent who has had a child with this condition. Ref 4189 | |
| MULTIPLE EPIPHYSEAL DYSPLASIA: | This rare disorder that affects the growth of the long bones. The family of a six year old child would like to speak with anyone who has knowledge of this disorder. Ref 3147 | |
| PACHYGYRIA: | The family of a six year old child would like to speak with another family who have a child with this rare disorder. Ref 4616 | |
| PITT- HOPKINS SYNDROME: | The parent of a child with this syndrome would like to have contact with a family who has a child with this condition to talk about the associated breathing difficulties. Ref 4289 | |
| SIBLING SUPPORT: | The adult sibling of a profoundly disabled person would to have contact with another sibling of a person with numerous disabilities who has overcome the personal problems associated with the sibling relationship and all it entails. Ref 187 | |
| SPONDYLOPMETAPHYSEAL DYSPLASIA, KOZLOWSKI TYPE: | The family of a six year old child would like to speak with another parent who has first hand knowledge of this rear genetic disorder and the corrective surgery that accompanies this condition. SDK is characterised by reduced calcification of the spine and pelvis resulting in short stature. Ref 3809 | |
| SUDDEN VISION LOSS: | The parents of a teenage child would like to speak with anyone who has experienced sudden vision loss for no apparent reason. Ref 4125 | |
| TEMPORAL SCLEROSIS: | Mother of 9 year old daughter who has a Left Mesial Temporal Sclerosis is looking to talk to another parent who has a child who has aggressive defiant behaviour relating to brain seizure activity. Ref 1000. | |
| TRICHORHINOPHALANGEAL SYNDROME TYPE II also known as LANGER-GIEDION SYNDROME: | This family would like to have contact with another family who has a child with this syndrome. Ref 1291 | |
| TRIPLE X SYNDROME: | The
parents of a 12 year old girls would like to speak with another family who
have a child of similar age or older with this syndrome. Ref 4642 |
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| TRICHOTILLOMANIA: | The mother of an 18 month old child would like to speak with another parent who has a child with this condition at a young age. Ref 3874 | |
| UNBALANCED CHROMOSONAL TRANSLOCATION 1 & 5: | This
mother of a child with this rare chromosomal disorder would like to speak
with a parent who has a child with a similar condition. Ref 4778 |
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| VISION RELATED LEARNING DISABILITY: | The mother of a 14 year old child would like to speak with another parent who has a child with this specific condition to discuss ways to assist in his learning and understand the situation. Ref 524 | |
| WEISSENBACHER-ZWEYMULLER SYNDROME: | The family of a five year old child would like to speak with another family who have a child with this condition to talk about development as her child gets older. Ref 3594 | |
| WILSONS DISEASE: | The mother of a 17 year old would like to speak with another parent who has a child with this condition who is of the same age or older. Ref 4755 | |
| WOLF-HIRSCHHORN SYNDROME: | The mother of a young child with the extremely rare chromosomal disorder would like to speak with anyone who has first hand knowledge of this condition. Ref 4239 | |
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