Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty...
Transcript of Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty...
100% of donations received are used to provide information & support to those affected by rare chromosome disorders. CDO does not employ any professional fundraisers. CH11200 FL Registration Number
A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL FREE (800-435-7352)
WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL OR RECOMMENDATION BY THE STATE.
MEMBERSHIPAPPLICATION Pleasecompleteandreturnviamailortoinfo@chromodisorder.orgPARTIYourName:___________________________________________________________NameofIndividual(Enrollee)withchromosomedisorderdiagnosis:______________________________________________________________________Enrollee’sDateofBirth:___________Parent(s)’names:___________________________________________________________________________MailingAddress:___________________________________________________________________________Phone:_________________________________E-mail:_________________________________SocialMediaHandles(Twitter,Facebook,Instagrametc.)__________________________________________________________________________________________________________________________________________Enrollee’sDetailedKaryotypeAnalysis–pleaseattachgeneticist’snarrativeifavailableMEDICAL/DEVELOPMENTALSYMPTOMS:Ifyouwishtosharemedical/developmentaldetailstohelpresearchersbetterunderstandrarechromosomedisorders,pleasecompletePartII.Thisinformationmayalsobeusedtoprovidemedicalnetworkingbaseduponsymptomslistedifrequested.PREFERENCES:(__)YES.Pleasesendmenetworkinginformationforthedisordershownabove.(__)YES.Iwouldliketosharemycontactinformation(ifyouchoosetoshare,emailaddressisautomaticallyincluded)toparticipatein___disordernetworking___medicalnetworking___regionalnetworking–pleasecheckallthatapply.(__)YES.Ifparticipatinginthemedicalnetworkingprogram,medicalinformationsubmittedwiththisapplicationmaybesharedwithCDOfamiliesrequestingcontactwithothersdealingwiththesamemedicalproblem.Pleasesign,date:___________________________________________
ChromosomeDisorderOutreach,Inc.P.O.Box724BocaRaton,FL33429-0724FamilyHelpline(561)[email protected]
Page2
CDOhighlyvaluesmemberprivacyandwereleaseinformationonlyaseachmemberdirectsandtoresearchersonlyasde-identifieddata.Viewourprivacypolicywww.chromodisorder.org/privacy-disclaimer
PARTII–MEDICALCONDITIONS–Pleasecircleallthatapply
Ambulation
Condition IfYesPleaseDescribe IfCorrected,Describehow?
UsesStander
UsesWalker
UsesWheelchair
WalksWithAssistance
Other
Behavior-LearningDisorder
Condition IfYesPleaseDescribe IfCorrected,Describehow?
ADD
ADHD
Aggression
AspergerSyndrome
Autism
AutisticSpectrumDisorder
AutisticTendencies
BipolarDisorder
Depression
Dyslexia
ObsessiveCompulsiveDisorder(OCD)
ObsessiveCompulsiveTendencies
OppositionalDefiantDisorder(ODD)
PDD
Self-InjuriousBehaviors
Self-StimulatingBehaviors
Page3
SensoryIntegrationDysfunction(SID)
Other
Blood-Related
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Anemia
Thrombocytopenia(LowPlatelets)
Other
Brain/Skull
Condition IfYesPleaseDescribe IfCorrected,Describehow?
CompleteAgenesisoftheCorpusCallosum
Craniosynostosis
DysgenesisoftheCorpusCallosum
Holoprosencephaly
Hydrocephaly
LateClosingoftheFontanel
Lissencephaly
Macrocephaly
Microcephaly
PartialAgenesis(Hypoplasia)oftheCorpusCallosum
PrematureClosingoftheFontanel
Other
Cancer
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Leukemia
Retinoblastoma
Rhabdomyosarcoma
Page4
WilmsTumor
Other
Dental-Teething
Condition IfYesPleaseDescribe IfCorrected,Describehow?
DelayedEruption
EarlyEruption
ExtraTooth/Teeth
GrindingofTeeth
HighArchedPalate
MisshapenTooth/Teeth
MissingTooth/Teeth
OralDefensiveness
OvercrowdingofTeeth
Poor/SoftEnamel
WidelySpacedTeeth
Other
DevelopmentalDelay
Condition IfYesPleaseDescribe IfCorrected,Describehow?
MildDD
ModerateDD
SevereDD
ProfoundDD
DysmorphicFeatures
Condition IfYesPleaseDescribe IfCorrected,Describehow?
BroadNasalBridge
Hypertelorism(WidelySpacedEyes)
Page5
LargeEars
LowSetEars
SacralDimple
SimianCrease(s)
Other
EndocrineSystem
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Addison'sDisease
AdrenalInsufficiency
AlopeciaAreata
DiabetesInsipidus
Hypercalcemia(ElevatedBloodCalciumLevel)
Hyperglycemia(HighBloodSugar)
Hyperthyroidism
Hypocalcemia(LowBloodCalciumLevel)
Hypoglycemia(LowBloodSugar)
Hypoparathyroidism
Hypothyroidism
Osteoporosis
Pseudohypoparathyroidism
Type1Diabetes(DiabetesMellitus,JuvenileDiabetes)
Other
FrequentInfections-Illnesses
Condition IfYesPleaseDescribe IfCorrected,Describehow?
BladderInfections
ClostridiumDifficile
EarInfections
Page6
Flu
G-TubeRelatedInfections
KidneyInfections
RSV
SinusInfections
SkinInfections
UpperRespiratoryInfections
UrinaryTractInfections
Other
Gastrointestinal
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Constipation
Crohn'sDisease
Impaction
IrritableBowelSyndrome
Reflux
Other
Genitalia-Puberty-Reproductive
Condition IfYesPleaseDescribe IfCorrected,Describehow?
AmbiguousGenitalia
Chordee
EarlyOnsetofPuberty
Hypospadias
LateOnsetofPuberty
MicroPenis
PrecociousPuberty
Undescendedtesticle(s)(Cryptorchidism)
Page7
Other
Growth
Condition IfYesPleaseDescribe IfCorrected,Describehow?
FailuretoThrive
GrowthProblems
OnGrowthHormoneTherapy
Overweight
SmallforAge
Other
Heart-BloodFlow
Condition IfYesPleaseDescribe IfCorrected,Describehow?
AorticStenosis
ASD
BicuspidValve
Cardiomyopathy
CoarctationoftheAorta
DORV
HeartMurmur
Hypertension(HighBloodPressure)
MitralValveProlapse(MVP)
PDA
PFO
PulmonaryAtresia
PulmonaryHypertension
PulmonaryStenosis
TetralogyofFallot
VSD
Page8
Other
ImmuneSystem
Condition IfYesPleaseDescribe IfCorrected,Describehow?
AutoimmuneDisorder
DrugAllergy
EnvironmentalAllergy
FoodAllergy
Immunodeficiency
RheumatoidArthritis
Other
Musculature
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Ataxia
CerebralPalsy
Hiatal(Diaphragmatic)Hernia
Hypertonia(HighMuscleTone)
Hypotonia(LowMuscleTone)
InguinalHernia
MixedMuscleTone
UmbilicalHernia
Other
Optic-Vision
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Amblyopia(LazyEye)
Astigmatism
Blind
Page9
Cataracts
Coloboma
CorticalVisionImpairment
DetachedRetina
Hyperopia(Farsightedness)
LegallyBlind
Microphthalmia(SmallEyes)
Myopia(Nearsightedness)
Nystagmus
OpticNerveAtrophy
OpticNerveHypoplasia
Ptosis
RetinalHypopigmentation
Strabismus(Esotropia)
Strabismus(Exotropia)
Other
Oral-Facial
Condition IfYesPleaseDescribe IfCorrected,Describehow?
CleftLip
CleftPalate
Micrognathia
Tonguetied
Other
Orthopedic
Condition IfYesPleaseDescribe IfCorrected,Describehow?
ClubFeet
Contractures
Page10
CurvedFinger(s)
ExtraFinger(s)
ExtraRib(s)
ExtraToe(s)
Feet/Anklesturninward
Feet/Anklesturnoutward
FlatFeet
FusedFingers
FusedToes
FusedVertebrae
Hemivertebra
HipDysplasia
HipLuxation/Dislocation
HipSubluxation
HyperextensibleJoints
Kyphosis
MissingFinger(s)
MissingRib(s)
MissingToe(s)
MissingVertebra(e)
SacralAgenesis
SacralDysgenesis
Scoliosis
SpinaBifida
TetheredSpinalCord
TightHamstring(s)
TightHeelCord(s)
WebbedFingers
WebbedToes
Page11
Other
Otic-Hearing
Condition IfYesPleaseDescribe IfCorrected,Describehow?
AtreticEarCanal(s)
Deaf
MildHearingImpairment
ModerateHearingImpairment
SevereHearingImpairment
StenoticEarCanal(s)
Other
PregnancyRelated
Condition IfYesPleaseDescribe IfCorrected,Describehow?
DifficultyConceiving
IVF
MiscarriagesDuetoChromosomalDisorder
PGD
Other
Respiratory
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Asthma
Bronchiomalacia
Bronchitis
ChronicLungDisease
Laryngomalacia
Pneumonia
ReactiveAirwayDisease
Page12
SleepApnea
Stridor
Tracheomalacia
Tracheotomy
Other
Seizures
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Absence(PetitMal)Seizures
Atonic(Drop)Seizures
ClonicSeizures
ComplexPartialSeizures
FebrileSeizures
MyoclonicSeizures
SimplePartialSeizures
TonicSeizures
Tonic-Clonic(GrandMal)Seizures
Other
Skin
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Acne
Cafe-Au-LaitsSpots
Candidiasis(Thrush)
Dermatitis
Eczema
Impetigo
Vitiligo
Page13
Warts
Other
Speech-Language
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Apraxia/Dyspraxia
MildSpeechImpairment
ModerateSpeechImpairment
Nonverbal
SevereSpeechImpairment
Other
Swallowing-Feeding
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Aspiration
Cannottoleratetexturesinfood
Drooling
Fundoplication
G-Tube
GagReflex
NGTube
Pica
PoorSuck
UncoordinatedSwallow
WeakSwallow
Other
Urinary
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Page14
EnlargedKidney(s)
Hydronephrosis
Megaureter
NeurogenicBladder
UreterReimplantation
VesicoureteralReflux(KidneyReflux)
Other
Condition IfYesPleaseDescribe IfCorrected,Describehow?
Condition1
Condition2
Condition3
Condition4