| Syndromes
and Conditions |
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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
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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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| VITILIGO:
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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 |
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| 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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