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 lisap@parent2parent.org.nz

8q12.1 DUPLICATION: The family of a 17-year-old girl would love to have contact with other families with children with this rare genetic condition. Ref 2093

19p 13.13 MICRODELETION: A mother of a 5-year-old girl would like to connect with another family raising a child with this microdeletion.  Ref: 24322

ALPHQ-DYSTROGLYCANOPATHY POMTI-2:  The mother of a 14-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 10-year-old boy 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 7-year-old son would like the opportunity to speak to another family who have a child with this very rare condition.   Ref 14488

CEREBRAL CAVERNOUS MALFORMATIONS: A mother of a 4-year-old boy would like to connect with another family raising a child with this condition.  Ref: 26103

CHILAIDITI SYNDROME: The mother of a 21-year-old daughter would like to speak to another parent who has a child with this rare syndrome. Ref 3750

CONGENITAL SUCRASE ISO-MALTASE DEFICIENCY:  The mother of a 7-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 7-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

DIFFUSE CAPILLARY MALFORMATION WITH OVERGROWTH:  The family of a 6-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 7-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 children under 10 diagnosed with this rare condition would love to connect with any other families who have a child or children with this same condition.  Ref 13959

EPILEPTIC ENCEPHALOPATHY: The mum of a 17-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 an 8-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 17-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

FRONTAL LOBECTOMY SURGERY:The mother of an almost two year old boy would like to talk to any parents who have children who have had a frontal lobectomy.  This surgery is being considered as a potential option for her son.  Ref 26569 

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

GRAVES DISEASE: The mother of a 12-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

GROWTH HORMONE INSENSITIVITY SYNDROME (GHIS): The mother of a 9-year-old girl would like to talk to another parent who has a child with the same rare condition. Ref 7051

HEPATIC PORTAL HYPERTENSION: The mother of a 5-year-old girl would really like to speak to and connect with another parent who has a child with this condition. Ref 23046

HERPES SIMPLEX ENCEPHALITIS:  The mum of a 3-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

IDIOPATHIC PULMONARY HEMOSIDEROSIS: The family of a 6-year-old girl would love to have contact with other families with children with this rare condition. Ref 23322

IMPERFORATE ANUS: The mother of a 12-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 18410

INSULIN-LIKE GROWTH FACTOR 1 RESITANCE (IGF 1 R): The mother of an 9-year-old girl would like to talk to another parent who has a child with the same rare condition. Ref 7051

KAT6A SYNDROME: A mother of a young child with a rare diagnosis of KAT6A would like to speak with another parent who also has a child with the same diagnosis. Ref 12680

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

LEUKODYSTROPHY: The family of a recently diagnosed daughter (10 years old) with Leukodystrophy would love to hear from other families who also have young children with this condition.  Their daughter specifically has H-ABC or TUB4A related leukodystrophy, but they welcome contact from families of children (under the age of 18) with any type of leukodystrophy.  Ref 26251 

MITROFANOFF PROCEDURE:  The parents of an 8-year-old son who is due to have this surgery later this year are interested in having contact with other parents who have also had a son undergo this operation.  Ref 23588

OSTEOGENESIS IMPERFECTA:  The mother of a baby with Osteogenesis Imperfecta would like to speak to other families who also have children with this condition.  Ref 26348 

POSTERIOR URETHRAL VALVES: The parents of an 8-year-old son with Posterior Urethral Valves are interested in speaking to other families who also have children with this condition.  Ref 23588

REFLEX ANOXIC SEIZURE: A mother of a 3-year-old boy would like to connect with another family raising a child with this condition.  Ref: 24780

RUBINSTEIN-TAYBI SYNDROME: A mother of a 1-year-old boy would like to connect with another family raising a child with this syndrome.  Ref: 24494

RUSSELL SILVER SYNDROME: A mother of a 1-year-old boy would like to connect with another family raising a child with this syndrome.  Ref: 25928

SPRENGEL DEFORMITY: The mum of a 7-year-old daughter would love to hear from families who have a child with this variant of spina bifida occulta. Ref 18851

STURGE WEBER SYNDROME: The mother of a 6-year-old daughter would like to have contact with another family with a child with this condition. Ref 16573

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

WOLF-HIRSCHHORN SYNDROME:  The family of a 15-year-old daughter would love to have contact with another family in Auckland or North of Auckland who also have a child with this condition.  Ref 5477

7q11.23 CHROMOSOME DUPLICATION:  The Mother of a 9-year-old son would love to have contact with other families who also have children with this condition. Ref 26260

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