| 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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| ANAPHYLACTOID REACTION TO BEE STINGS: | The mother of a child with this condition would like to speak with another parent who has a child with the same condition to discuss safety and self care. Ref 5581 | |
| ASPERGERS SYNDROME & BLIND: | The parent of a 10 year old child would like to have contact with the parent of a child who has Aspergers syndrome and is completely blind to discuss the associate problems and strategies for this dual condition. Ref 5097 | |
| BENIGN INFANTILE SHUDDERS: | The parent of a two year old child would like to speak with another parent who has a child with this relatively rare condition. Ref 3536 | |
| BODY DYSMORPHIC DISORDER: | The mother of a teenage girl who has developed this disorder would like to speak with another parent who has had a child with this disorder about strategies to help rebuild confidence and self esteem. Ref 5187 | |
| BRANCHIO-OTO-RENAL SYNDROME: | The parent of a three year old child would like to speak to another parent who has a child with this rare condition. Ref 5854 | |
| 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 | |
| CHROMOSOME DELETION 13Q33.2: | The family of a two year old child would like to speak with another parent whose child has the same chromosome partial deletion. Ref 5788 | |
| CONGENITAL SUCRASE-ISOMALTASE DEFICIENCY (CSID): | The parent of two daughters with this disorder would like to have contact with anyone who has first hand knowledge of the condition in regards to diet and recipes and the actual condition. Ref 5556 | |
| CHROMOSOME 15 DELETION - DE NOVO TYPE: | The parents of a 12 month old child would like to make contact with another family whose child has this non inherited chromosome condition and also has an Atrial Septal Defect. Ref 5410 | |
| DAVERTS SYNDROME with SCN1A MUTATION: | The parent of a two year old child would like to speak with a parent who has a child condition. Ref 5838 | |
| EXTRA CORPOREAL MEMBRANE OXYGENATION (ECMO): | The parent of an eight month old baby would like to speak with another parent who has a child who has received ECMO treatment for a longer than normal duration of time. This contact is in regards to any long term developmental implications. Ref 5653 | |
| GORDON SYNDROME: | The
mother of a 14 year old would like to speak to another family who has a
child with this rare condition. Ref 5737 |
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| INTRAUTERINE BLOOD TRANSFUSION: | The mother of a 12 month old child would like to speak with another mother whose baby received a intrauterine blood transfusion. Ref 5289 | |
| KALLMANNS SYNDROME: | The parent of a young child with this syndrome would like to speak to another parent who has a child under the age of 10 years with the same condition. Ref 6010 | |
| LARYNGEAL CLEFT TYPE 1: | The mother of a five year old child would like to speak with another parent whose child has this condition. Ref 5956 | |
| MIGRATING PARTIAL EPILEPSY IN INFANCY: | The parent of an eight year old child would like to make contact with families who have a child with this rare form of epilepsy. Ref 5525 | |
| MYEYIN DISORDER: | The mother of a 10 year old child would like to speak to another parent who has an older child with this condition. Ref 4605 | |
| MOEBIUS SYNDROME: | The
parent of a five year old child would like to speak with another parent
whose child has this condition and is older. Ref 4921 |
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| PELIZAEUS-MERZBACHER DISEASE: | The family of a young child with this condition would like to talk to anyone who has first hand knowledge of this disease in its final stages. Ref 5495 | |
| PFAPA SYNDROME also known as MARSHALLS SYNDROME: | The mother of a young child would like to speak with another family who has a child with this condition. Ref 5785 | |
| PRIMARY ANTIPHOSPHOLIPID SYNDROME: | The mother of adult daughter would like to talk to another parent whose daughter has developed this condition in adulthood. Ref 6086 | |
| REFLEX ANOXIC SEIZURES: | The mother of a three year old child would like to speak with other parents who have a child who experiences this type of seizure. Ref 5843 | |
| SALIVARY GLANDS REDUCTION SURGERY: | This mother would like to speak with another parent whose child has had this surgery to reduce dribbling. Ref 4811 | |
| SANFILIPPO SYNDROME: | The carer of a teenager would like to talk to families and carers who have experienced the stages of this syndrome and its complications. Ref 5857 | |
| 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 | |
| SLIPPED UPPER FEMORAL EPIPHYSIS (SUFE): | The
parent of a 15 year old would like to speak with another parent who has
first hand knowledge of this condition. Ref 524 |
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| SURGERY – CHIARI MALFORMATION: | The parent of a seven year child would like to speak with another parent who has child who has undergone surgery for this condition which involves foramen magnum decompression with duraplasty and hindbrain hernia pain. Ref 5731 | |
| TECTAL PLATE TUMOR: | The parent of a 12 month old child would like to speak with another parent who has a child with this condition. Ref 5305 | |
| TOILETING ISSSUES: | This parent is looking to speak with another parent whose child has had corrective surgery for imperforate anus and gone through toilet training. This parent would is looking for support toilet training issue. Ref 2000 | |
| 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 | |
| VITILIGO: | The mother of a teenager with this condition would like to speak to another parent whose teenager has this condition to discuss the social impacts and complications this condition has on teenagers and their self esteem. Ref 5810 | |
| 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 | |
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