Syndromes and Conditions







We are currently looking for contacts for the following families.

If you can help please contact National Office 0508 236 236 or email us at national@parent2parent.org.nz

   
ACHONDROPLASIA: The parent of a five year old child with this condition would like to speak with a parent who has an older child with the same condition. Ref 4920
   
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
   
CERVICAL TERATOMA: The mother of a young baby would like to speak to another parent whose child has this rare congenital condition. Ref 4946
   
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
   
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
   
DOWN SYNDROME & SEIZURES: The parents of a 16 month old child would like to speak with another parent who has a child with Down syndrome and severe seizures to discuss medications and implications of the seizures and medication on development. Ref 4817
   
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
   
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
   
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: This parent would like to speak with another family who have a child with this condition to talk about how this condition affects a child and the long term implications. Ref 5372
   
MICROPTHALMIA: The mother of a 12 month old child would like to speak to another parent who has a child with this condition. Ref 5085
   
MIRGRATING 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
   
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


   
NEUROGENIC BLADDER: The mother of a 11 year old child would like to speak with another parent who has a child slightly older with this condition and has to be catheterized. Ref 4277
   
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
   
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
   
SALIVARY GLANDS REDUCTION SURGERY: This mother would like to speak with another parent whose child has had this surgery to reduce dribbling. Ref 4811

   
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
   
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
   
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
   
 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
   


If anyone is able to help out, please contact National Office on 0508 236 236 or email matchingandinfo@parent2parent.org.nz as soon as possible.

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