National match register

Sometimes we are not able to connect a family with a support parent who has a child with a similar condition, and we need to search further afield. We are currently looking for contacts for the following conditions.

If you are able to be a support contact for any of these families, please contact our support parent and information team on 0508 236 236 or email carolynj@parent2parent.org.nz

 

ALLAN-HERNDON-DUDLEY SYNDROME OR MCT8:  The family of a 9 year old son would love to have contact with another family who also have a child with this condition.  Ref 12155

ALPHQ-DYSTROGLYCANOPATHY POMTI-2:  The mother of a 9 year old daughter would love to have contact with another family who also have a child with this condition.  Ref 8162

ATAXIC DYSARTHRIA: The mother of a 7 year old boy recently diagnosed with this condition would like to talk with another family who has a child with this rare condition. Ref 4708

AUTONOMIC DYSFUNCTION / DYSAUTONOMIA: The family of a 2 year old son would like the opportunity to speak to another family who have a child with this very rare condition.   Ref 14488

BODY DYSMORPHIC DISORDER:  The mother of a 17 year old daughter with Body Dysmorphic Disorder would like to speak to another parent who also has a child with this condition.  Ref 1619

CONGENITAL SUCRASE ISO-MALTASE DEFICIENCY:  The mother of a 2 year old son would like to have contact with another family who also has a child with this condition.  Ref 15667

CONGENITAL VENOUS MALFORMATION / VASCULAR MALFORMATION:  The mother of a 2 year old son would like to speak to another family who have a child with this condition, specifically regarding the eye socket and surgery/placement of a false eye.  Ref 14549

DENYS-DRASH SYNDROME: The mother of a 9 year old daughter with this extremely rare condition would love to connect with another parent whose child has this condition, and who has undergone a kidney transplant. Ref 17872

DIFFUSE CAPILLARY MALFORMATION WITH OVERGROWTH:  The family of a 1 year old son would like to have contact with another family who also have a family member with the same condition.  Ref 15608

DYSAUTONOMIA / AUTONOMIC DYSFUNCTION: The family of a 2 year old son would like the opportunity to speak to another family who have a child with this very rare condition.   Ref 14488

ECTRODACTYL ECTODERMAL DYSPLASIA CLEFT LIP/PALATE:  The family of two young children diagnosed with this rare condition would love to connect with any other families who have a family member with this same condition.  Ref 13959

EPILEPTIC ENCEPHALOPATHY: The mum of a 13 year old daughter with Febrile Illness Refractory Epilepsy Syndrome (FIRES) and resultant epileptic encephalopathy following a tick bite would love to have contact with other families with this rare form of epilepsy. Ref 18927

EPISPADIAS SPECTRUM SYNDROME: The mother of a 4 year old daughter would love to connect with another family with a daughter with this rare condition. She would also like to speak with a parent about Mitrofanoff catheters, aka suprapubic catheters and their care and use. Ref 17850

FEBRILE ILLNESS REFRACTORY EPILEPSY SYNDROME (FIRES): The mum of a 13 year old daughter with Febrile Illness Refractory Epilepsy Syndrome (FIRES) and resultant epileptic encephalopathy following a tick bite would love to have contact with other families with this rare form of epilepsy. Ref 18927

FUNCTIONAL NEUROLOGICAL DISORDER AND/OR SUDDEN LOSS OF VISION (TEENAGE MALE):  The mother of a teenage son would like to have contact with another family who have a teenage boy diagnosed with Functional Neurological Disorder or the onset of loss of vision in teenage years.  Ref 13601

GRAVES DISEASE: The mother of a 9 year old boy with Graves Disease and thyroidectomy would love to connect with another parent who has a child with the same condition. Ref 18831

HERPES SIMPLEX ENCEPHALITIS:  The mum of a 1 year old boy with intellectual disability and global developmental delay caused by this condition would love to connect with other families with children affected by this virus. Ref 19993

IMPERFORATE ANUS: The mother of a 9 year old girl with imperforate anus (with no other co-existing conditions) who has had a MACE procedure would love to connect with other families with daughters of similar age who similarly have no other conditions. It is hoped that in time the girls could contact each other and be a source of support for each other. Ref 1841

LEFT VENTRICULAR NON-COMPACTION: The family of a 14 year old young man would like to connect with families with children with this condition, preferably the isolated form of LVNC. Ref 16596

LOWE SYNDROME: The mum of a 2 year old son would love to make contact with other families with children with this rare genetic condition. Ref 17860

MITROFANOFF CATHETER/SUPRAPUBIC CATHETER: The mother of a 4 year old with Epispadias Spectrum Syndrome would like to speak with other parents about the use and care of these catheters in girls. Ref 17850

MITOCHONDRIAL ENCEPHALOMYOPATHY: The mother of an  8 year old boy would love to have contact with another family who have a child with this rare metabolic condition. Ref 16387

OCCULAR MOTOR APRAXIA:  The family of an 11 year old son would like to have contact with another family who have a child with this condition.  Ref 96

RHIZOMELIC CHONDRODYSPLASIA PUNCTATA: The mother of a 20 year old son with this rare disorder would like to support other families who may also have children with this disorder. Ref 16973

SPRENGEL DEFORMITY: The mum of a 4 year old daughter would love to hear from families who have a child with this variant of spina bifida occulta. Ref 18851

STICKLER SYNDROME:  The mother of a young child would like to talk to another parent who also has a child with a diagnosis of Stickler Syndrome.  Ref 15421

STURGE WEBER SYNDROME: The mother of a 2 year old daughter would like to have contact with another family with a child with this condition. Ref 16573

UTERUS DIDELPHYS: The mother of a 13 year old daughter would like to make contact with other families with daughters around the same age or older with this condition. Ref 1182

VASCULAR MALFORMATION / CONGENITAL VENOUS MALFORMATION:  The mother of a 2 year old son would like to speak with another family who have a child with this condition, specifically regarding the eye socket and surgery/placement of a false eye.  Ref 14549

VESTIBULAR DISORDER AND HEARING LOSS:  The family of a 5 year old daughter with vestibular disorders and associated hearing loss would love to make contact with another family who also has a child affected in this way.  Ref 14595

WALKER-WARBURG SYNDROME:  The father of an 11 month old daughter would like to have contact with another family who also have a child with this condition.  Ref 14139