chromosome disorder outreach, inc. 724 boca raton, … genitalia chordee early onset of puberty...

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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. MEMBERSHIP APPLICATION Please complete and return via mail or to [email protected] PART I Your Name: ___________________________________________________________ Name of Individual (Enrollee) with chromosome disorder diagnosis: ______________________________________________________________________ Enrollee’s Date of Birth:___________ Parent(s)’ names: ___________________________________________________________________________ Mailing Address:________________________________ ___________________________________________ Phone: _________________________________ E-mail: _________________________________ Social Media Handles (Twitter, Facebook, Instagram etc.)______________________________________________ ____________________________________________________________________________________________ Enrollee’s Detailed Karyotype Analysis – please attach geneticist’s narrative if available MEDICAL/DEVELOPMENTAL SYMPTOMS: If you wish to share medical/developmental details to help researchers better understand rare chromosome disorders, please complete Part II. This information may also be used to provide medical networking based upon symptoms listed if requested. PREFERENCES: (__) YES. Please send me networking information for the disorder shown above. (__) YES. I would like to share my contact information (if you choose to share, email address is automatically included) to participate in ___disorder networking___medical networking___regional networking – please check all that apply. (__) YES. If participating in the medical networking program, medical information submitted with this application may be shared with CDO families requesting contact with others dealing with the same medical problem. Please sign, date: ___________________________________________ Chromosome Disorder Outreach, Inc. P.O. Box 724 Boca Raton, FL 33429-0724 Family Helpline (561) 395-4252 [email protected] www.chromodisorder.org

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Page 1: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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]

Page 2: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 3: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 4: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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)

Page 5: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 6: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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)

Page 7: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 8: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 9: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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

Page 10: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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

Page 11: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 12: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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

Page 13: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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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?

Page 14: Chromosome Disorder Outreach, Inc. 724 Boca Raton, … Genitalia Chordee Early Onset of Puberty Hypospadias Late Onset of Puberty Micro Penis Precocious Puberty Undescended testicle(s)

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EnlargedKidney(s)

Hydronephrosis

Megaureter

NeurogenicBladder

UreterReimplantation

VesicoureteralReflux(KidneyReflux)

Other

Condition IfYesPleaseDescribe IfCorrected,Describehow?

Condition1

Condition2

Condition3

Condition4