National haemophilia no 202 june 2018 web

National

Haemophilia Foundation Australia

Haemophilia www.haemophilia.org.au

No. 202, June 2018

LIGHT IT UP

RED #WHD2018

WORLD HAEMOPHILIA DAY 180512 HFA_journal-June_3.indd 1

29/5/18 3:19 pm

CONTENTS 2

New staff

3

From the President

4

WHD 2018

6

MyABDR – what’s coming up

7

TFF survey

10

Women and peer UWRRQTV s *(9# Æ‚PCN

12

Looking after your veins

14

Why is my child limping?

17

Transition

20

2018 Go For It Grants

20

About bleeding disorders brochure

21

Youth update

22

Youth News

24

Calendar/HFSA update

Haemophilia Foundation Australia Registered No.: A0012245M ABN: 89 443 537 189 7 Dene Avenue Malvern East, Victoria, Australia 3145 Tel: +61 3 9885 7800 Freecall: 1800 807 173 Fax: +61 3 9885 1800 hfaust@haemophilia.org.au www.haemophilia.org.au Editor: Suzanne O’Callaghan

0GY Poppy Staff Sparsi N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

Poppy Sparsi joined the HFA team as the #FOKPKUVTCVKQP 1HÆ‚EGT KP /CTEJ

2

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FROM THE

PRESIDENT Gavin Finkelstein

We YKNN DG TGRQTVKPI QP VJG 9(* 9QTNF %QPITGUU KP )NCUIQY 5EQVNCPF KP VJG 5GRVGODGT GFKVKQP QH National Haemophilia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oU (CEGDQQM RCIG QT 6YKVVGT HGGF CHALLENGES OF COMMUNICATIONS

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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

WORLD CONGRESS

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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

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N a ti ona l H a em ophi l i a N o. 20 2, Ju ne 2 0 1 8

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MYABDR WHAT’S COMING UP? From the National Blood Authority and HFA MyABDR teams

WHAT HAPPENS TO YOUR USER FEEDBACK?

As RCTV VJG QPIQKPI YQTM VQ KORTQXG /[#$&4 *(# CPF VJG 0CVKQPCN $NQQF #WVJQTKV[ TGIWNCTN[ UGGM HGGFDCEM HTQO /[#$&4 WUGTU CDQWV EJCPIGU VJG[ YQWNF NKMG VQ UGG VQ VJG CRR QT YGDUKVG ;QW OC[ TGECNN HQT GZCORNG VJG /[#$&4 WUGT UWTXG[ KP ,WPG ,WN[ 6JGUG DGEQOG pEJCPIG TGSWGUVUq %JCPIG TGSWGUVU ECP CNUQ EQOG HTQO QVJGT UQWTEGU (QT GZCORNG WUGTU ECP IKXG HGGFDCEM FKTGEVN[ VQ VJG /[#$&4 5WRRQTV 6GCO QT *(# QT NQECN (QWPFCVKQPU YJQ VJGP RCUU VJGO QP *CGOQRJKNKC 6TGCVOGPV %GPVTGU

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N a ti ona l H a em ophi l i a N o. 20 2, Ju n e 2 0 1 8

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5VC[ VWPGF HQT OQTG FGVCKNU ANY QUESTIONS OR NEED HELP?

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MYABDR TIPS

Some people are coming back to using MyABDR after being on a ENKPKECN VTKCN QT UVCTVKPI VQ WUG /[#$&4 HQT VJG Æ‚TUV VKOG 9JCV VKRU do regular MyABDR users have for new users? Michael, a MyABDR user from South Australia, had this to offer: My favourite features are: U

4-digit pin access code for log in

U

Easy-to-track stock levels

U

Simple user interface for recording bleeds

My tips for new users or people coming back to it are: U

Get into the habit of bringing your device with you when injecting so it’s right there and you don’t forget.

U

Put the app on your device’s front screen so it’s always in sight.

Even subconsciously you will see it and this helps to remind you to use it.

s

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THE FEMALE FACTORS SURVEY Suzanne O’Callaghan +P #RTKN *(# WPFGTVQQM CP GXCNWCVKQP UWTXG[ QH QWT VYQ TGEGPV The Female Factors DQQMNGVU A snapshot of bleeding disorders in females and Finding out you carry the gene 9G YCPVGF VQ MPQY KH YG YGTG QP VTCEM YKVJ VJG DQQMNGVU YG JCF RWDNKUJGF CPF YJCV KORTQXGOGPVU VQ OCMG KP VJG HWVWTG The Female Factors KU VJG *(# YQOGP CPF IKTNU RTQLGEV 6JG RTQLGEV KU FGXGNQRKPI URGEKƂE KPHQTOCVKQP TGUQWTEGU HQT #WUVTCNKCP YQOGP CPF IKTNU CHHGEVGF D[ DNGGFKPI FKUQTFGTU VQ r

Increase their understanding of their bleeding disorder, VTGCVOGPVU CPF UVTCVGIKGU VQ OCPCIG KV

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Help them to feel more connected YKVJ GCEJ QVJGT D[ UJCTKPI RGTUQPCN UVQTKGU CPF VKRU YKVJ QVJGTU KP similar situations

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(QT VJGUG YQOGP HGGNKPIU QH KUQNCVKQP CTG EQOOQP 1,2 WHO COMPLETED THE SURVEY?

37 RGQRNG EQORNGVGF VJG UWTXG[ 29 female, 8 male

6JG[ YGTG HTQO CNN UVCVGU CPF VGTTKVQTKGU GZEGRV 0QTVJGTP 6GTTKVQT[ CPF 6CUOCPKC FKF PQV FKUENQUG YJGTG VJG[ NKXGF 72% YGTG 31-54 [GCTU QH CIG

BLEEDING DISORDER THAT APPLIES TO YOUR SITUATION

r r

70%

r 60%

KPVTQFWEVKQP KKPVTQFWEVK KPVTQFWEVKQP VQ DNGGFKPI PVTQF FWEVKQP FW WEVKQ QP P VVQ Q DNGGF D DNGGFKPI DNGGFK NG GG GF FKKP PI I disorders in females YQTMKPI YKVJ *6%U CPF QVJGT JGCNVJ ECTG RTCEVKVKQPGTU

50%

40%

30%

20%

10%

Haemophilia Von willebrand disorder

Rare clotting Inherited Acquired Factor platelet function Haemophilia disorder disorder

Other (please specify)

PLEASE TICK ALL STATEMENTS THAT APPLY TO YOUR SITUATION 70%

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60%

r

50%

N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

40%

8

30%

20%

10%

I have a bleeding disorder

I carry the gene

My partner has a bleeding disorder

I am the parent of a girl or women with a bleeding disorder

Someone I am close to has a bleeding disorder

I am a haemophilia health professional

I have a professional interest in bleeding disorder

EEQOOQP TGCEVKQPU QOOQP TGCEVKQ QP PU VQ FKCIPQUKU YJGTG VQ IQ HQT UWRRQTV

WHAT DID THEY THINK OF THE BOOKLETS 86% had seen the Snapshot of bleeding disorders in females 66% had seen Finding out you carry the gene

What was the impact for them?

48% had seen the print XGTUKQP 66% had seen the online XGTUKQP

Âź-ÕÀÀi` “i œ˜ ĂŒÂœ w˜` ÂœĂ•ĂŒ Â“ÂœĂ€i ˆ˜vÂœ vĂ€ÂœÂ“ ĂŒÂ…i `ÂœVĂŒÂœĂ€Ăƒ re children and starting a family.’

85% VJQWIJV VJG[ YGTG very or extremely useful 72% VJQWIJV VJG design and layout YCU very good or excellent

‘More info and evidence of what I say is not rubbish.’

What did they like?

‘As a male, a broader understanding.’

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‘I have sought to talk with some others who I know have bleeding disorders to ask their advice.’

WHAT’S NEXT

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Suggestions for improvement

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‘People can refer to them again - conversations can be forgotten or misunderstood. When sharing information with others who are new to clotting factor issues they viiÂ? Ăƒ>vi >˜` Vœ“vÂœĂ€ĂŒ>LÂ?i >˜` V>˜ w˜` >Â˜ĂƒĂœiĂ€Ăƒ LĂ•ĂŒ >Â?ĂƒÂœ questions to ask health professionals.’

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‘My daughter was happy there was something that was just for females.’

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‘Great layout. Easy to peruse.’

“A lady found it in my work waiting room and was so thrilled to have something concrete about herself.� “Thank you for producing a quality resource for women and their families to use.�

WHAT DID THEY DO WITH THE BOOKLETS? 68% RCUUGF DQQMNGVU QP VQ other family members 18% UJQYGF DQQMNGVU VQ their health professionals Why?

‘Was good showing my family.’ ‘To educate carriers in the family who are considering starting a family who hadn’t been informed about their considerations or connected to an HTC yet.’ ‘So that we are not alone and that we suffer as well.’ ‘Acknowledging that these symptoms are real and do affect the person’s life is very helpful. It is also helpful if they are able to talk about them to their doctors and to get some help with their symptoms.’

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REFERENCES *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC 9QOGP CPF DNGGFKPI FKUQTFGTU RTQLGEV TGRQTV 7PRWDNKUJGF TGRQTV /GNDQWTPG 4GPCWNV 0- *QYGNN 4' 4QDKPUQP 5 GV CN 3WCNKVCVKXG CUUGUUOGPV QH VJG GOQVKQPCN CPF DGJCXKQWTCN TGURQPUGU QH JCGOQRJKNKC # ECTTKGTU VQ PGICVKXG GZRGTKGPEGU KP VJGKT OGFKECN ECTG *CGOQRJKNKC

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‘The desire to educate more family members/well wishers/school educators.’

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WOMEN AND P Cheryl Ellis

PEER SUPPORT FOR WOMEN IN A LOCAL CONTEXT

*QY CTG NQECN (QWPFCVKQPU GZRNQTKPI RGGT UWRRQTV HQT YQOGP CPF YJCV ECP YG NGCTP HTQO VJGKT GZRGTKGPEGU!

N a ti ona l H a em ophi l i a N o. 20 2, Ju n e 2 0 1 8

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6JG NQECN (QWPFCVKQP CEVKXKVKGU VQ EQPPGEV CPF UWRRQTV YQOGP CTG C EQPETGVG YC[ QH OCMKPI C FKHHGTGPEG HQT YQOGP *(# KU CNUQ KPENWFKPI RGTUQPCN UVQTKGU HTQO #WUVTCNKCP YQOGP YKVJ VJG GXKFGPEG based information in all The Female Factors GFWECVKQP OCVGTKCNU 6JKU TGRQTV HTQO *CGOQRJKNKC (QWPFCVKQP 9GUVGTP #WUVTCNKC *(9# KU VJG UGEQPF KP C UGTKGU CDQWV NQECN RGGT UWRRQTV HQT YQOGP HTQO #WUVTCNKCP 5VCVG CPF 6GTTKVQT[ (QWPFCVKQPU A LITTLE BIT ABOUT ME

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+ NQQM DCEM PQY CPF UGG OQUV QH VJCV VKOG CU C DNWT 9G JCF PQ RTGXKQWU HCOKN[ JKUVQT[ DWV + MPGY YJCV VJG TGIKUVTCT YCU VGNNKPI OG UKPEG +oO C TGIKUVGTGF PWTUG *GCTKPI VJG YQTFU p;QWT UQP JCU C UGXGTG DNGGFKPI FKUQTFGTq HGNV NKMG C PKIJVOCTG VJCV + EQWNFPoV YCMG WR HTQO HQT C NQPI VKOG 'KIJVGGP OQPVJU NCVGT YG JCF CPQVJGT UQP YJQ CNUQ JCU UGXGTG JCGOQRJKNKC # *CXKPI UGXGPVGGP CPF UKZVGGP [GCT QNF UQPU YJQ both JCXG DNGGFKPI FKUQTFGTU UQOGJQY OCFG KV GCUKGT UKPEG VJG[ CTG VTGCVGF VJG UCOG 1PEG YG GOGTIGF VJTQWIJ VJG WRU CPF FQYPU QH DNGGFU ENKPKE CRRQKPVOGPVU KPHWUCRQTVU UOCNN FGXKEGU UWTIKECNN[ RNCEGF WPFGT VJG UMKP QP VJGKT EJGUV VQ KPHWUG ENQVVKPI HCEVQT VTGCVOGPV JKIJ VGORGTCVWTGU KPJKDKVQTU NGCTPKPI VQ KPVTCXGPQWUN[ ECPPWNCVG CPF OQTG O[ VJQWIJVU VWTPGF VQ VJG EQPUGSWGPEGU HQT O[UGNH + YCU IGPGVKECNN[ VGUVGF CPF HQWPF VQ DG C ECTTKGT QH VJG JCGOQRJKNKC # IGPG DWV CNUQ + JCXG HCEVQT 8+++ NGXGNU QH CU RGT O[ EWTTGPV #$&4 ECTF YJKEJ OGCPU + JCXG OKNF JCGOQRJKNKC + FGEKFGF VJCV + YQWNF NKMG VQ WUG O[ RQYGTU HQT IQQF CPF LQKPGF VJG *(9# EQOOKVVGG KP +oO EWTTGPVN[

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99+$& OGGVKPIU CTG 2GTVJ OGVTQ DCUGF GXGPVU RTQXKFGF NGXGNU CPF KH PGEGUUCT[ JCXKPI C VTGCVOGPV RNCP KP RNCEG D[ *(9# VQ CNNQY YQOGP CPF IKTNU CHHGEVGF D[ CP KPJGTKVGF DNGGFKPI FKUQTFGT VQ EQOG VQIGVJGT KP C TGNCZGF CPF PEER EDUCATION GPLQ[CDNG UGVVKPI *(9# JQNF VJGO CRRTQZKOCVGN[ GXGT[ VJTGG OQPVJU CPF WUWCNN[ CU C 5WPFC[ OQTPKPI DTGCMHCUV 'FWECVKQPCN KPHQTOCVKQP UWEJ CU VJG Finding Out You 1EECUKQPCNN[ YG OKZ KV WR C NKVVNG CPF JCXG CHVGTPQQP JKIJ Carry the Gene and A Snapshot of Bleeding Disorders VGC QT NWPEJ 1WT 99+$& OGGVKPIU CTG WUWCNN[ CVVGPFGF in Females DTQEJWTGU CTG ITGCV TGUQWTEGU YG WUG VQ D[ CP[YJGTG HTQO VGP VQ VYGPV[ YQOGP CPF HGGFDCEM YG RTQXKFG C UVCTVKPI RQKPV HQT KPHQTOCVKQP YJGP YG CPF JCXG TGEGKXGF KPENWFGU JQY GPLQ[CDNG VJQWIJV RTQXQMKPI QVJGT YQOGP KP QWT HCOKNKGU CTG KFGPVKÆ‚GF CU ECTT[KPI VJG CPF DGPGÆ‚EKCN VJG OGGVKPIU JCXG DGGP KP VJG RCUV 1PG JCGOQRJKNKC IGPG CPF YCPV VQ UGGM CUUKUVCPEG RTKQT VQ QH QWT EQOOKVVGG OGODGTU CPF C TGIWNCT CVVGPFGG VQ QWT UVCTVKPI C HCOKN[ QT YJGP RNCPPKPI RTQEGFWTGU CPF JQY OGGVKPIU JCU EQOOGPVGF VJCV VJG OQTG KPENWUKXG PCOGU VQ CEEGUU UGTXKEGU CV VJG *CGOQRJKNKC 6TGCVOGPV %GPVTG QH VJG YQOGPoU OGGVKPIU TGCNN[ GPEQWTCIGU YQOGP YKVJ *(9# RTQXKFGF VJG DTQEJWTGU VQ QWT OGODGTU VJTQWIJ C XQP 9KNNGDTCPF FKUQTFGT CPF QVJGT DNGGFKPI FKUQTFGTU VJCP OCKNQWV YKVJ QWT PGYUNGVVGTU CPF GOCKNGF NKPMU VQ CEEGUU JCGOQRJKNKC VQ RCTVKEKRCVG VJG 2&(U HTQO *(9#oU YGDUKVG + CNUQ VCMG EQRKGU QH VJGUG 1WT OGGVKPIU RTQXKFG QRRQTVWPKVKGU VQ FKUEWUU KPFKXKFWCN DTQEJWTGU YKVJ OG VQ VJG YQOGPoU OGGVKPIU GZRGTKGPEGU CPF KUUWGU KORQTVCPV VQ WU 6JGTG CTG OCP[ EQOOQP UWDLGEVU QH FKUEWUUKQP UWEJ CU JQY YG ECOG VQ Æ‚PF QWV QWT DNGGFKPI UVCVWU CPF JKUVQT[ CRRTQCEJKPI FQEVQTU CPF OGFKECN UVCHH HQT CUUKUVCPEG KP VJG RCUV CPF EWTTGPVN[ VJG RTQDNGOU HCEGF YJGP VCNMKPI VQ OGFKECN UVCHH YJQ FQPoV WPFGTUVCPF DNGGFKPI FKUQTFGTU QWT EJKNFTGP CPF VJGKT JGCNVJ VTCXGNNKPI YKVJ DNGGFKPI FKUQTFGTU CPF QVJGT

OTHER OPPORTUNITIES TO CONNECT

1WT [QWVJ ITQWR RCTGPV HCOKN[ OGGVKPIU CPF HCOKN[ ECORU CNUQ RTQXKFG IKTNU CPF YQOGP YKVJ QRRQTVWPKVKGU VQ VCMG RCTV KP HWP CEVKXKVKGU CPF OGGV QVJGT RGQRNG CPF families in similar situations.

N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

WOMEN’S GROUP MEETINGS

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LOOKING AFTER YOUR VEINS Robyn Shoemark and Helen Starosta

Home VTGCVOGPV CPF RTQRJ[NCZKU JCXG DGEQOG C YC[ QH NKHG HQT RGQRNG YKVJ JCGOQRJKNKC +V KU XGT[ KORQTVCPV VQ NQQM CHVGT XGKPU CU [QW YKNN PGGF VQ WUG VJGO HQT C NQPI VKOG 9JKNG IKXKPI HCEVQT OC[ DG EJCNNGPIKPI [QW QT [QWT EJKNFoU ECTGIKXGTU CTG VJG DGUV RGQRNG VQ CFOKPKUVGT HCEVQT TGRNCEGOGPV VJGTCR[ WUKPI XGKPU QPEG [QW MPQY JQY VQ FQ KV

How do these exercises improve your veins?

WHAT ARE VEINS?

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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

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VEIN ROTATION

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What can you do to make things go more smoothly when you need treatment?

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Ask for help s UQOGVKOGU [QW YKNN JCXG RTQDNGOU FGURKVG [QWT DGUV GHHQTVU 4GOGODGT KV KU QM VQ CUM HQT JGNR KH [QW CTG JCXKPI RTQDNGOU

(QT OQTG KPHQTOCVKQP CDQWV NQQMKPI CHVGT [QWT XGKPU VCNM VQ VJG JCGOQRJKNKC PWTUG CV [QWT *CGOQRJKNKC 6TGCVOGPV %GPVTG

#WDWTP /E+PV[TG KU VJG *CGOQRJKNKC 2J[UKQVJGTCRKUV CV VJG 9QOGPoU %JKNFTGPoU *QURKVCN #FGNCKFG

WHY IS MY CHILD LIMPING? 9JGP [QWT EJKNFoU LQKPV CPF OWUENG RCKP KU PQV C DNGGF Auburn McIntyre

+P VJKU CTVKENG YG YKNN DG NQQMKPI CV RCTVKEWNCT OWUEWNQUMGNGVCN OCVVGTU VJCV ECP QEEWT KP CNN EJKNFTGP CPF CFQNGUEGPVU PQV LWUV VJQUG YKVJ JCGOQRJKNKC 6JGUG EQPFKVKQPU ECPPQV QEEWT QPEG [QW DGEQOG CP CFWNV CU VJG[ TGNCVG VQ ITQYVJ CPF ITQYKPI DQPGU CPF OWUENGU BONES

%JKNFTGPoU DQPGU CTG UQHVGT CPF OQTG RNKCDNG VJCP CFWNV DQPGU #U C TGUWNV VJG DQPGU QH [QWPIGT RGQRNG ECP DGPF CPF EJKNFTGP JCXG pITGGP UVKEM HTCEVWTGUq UQOGVJKPI CFWNVU ECP PQ NQPIGT JCXG # NKVVNG NKMG C [QWPI VTGG VJG DCTM ECP RGGN FQYP TCVJGT VJCP ENGCPN[ UPCR 5GEQPFN[ VJG NQPI DQPGU G I VJG VJKIJ UJKP CPF CTO DQPGU JCXG ITQYVJ RNCVGU CV DQVJ GPFU 6JG NQPI DQPGU DGEQOG NQPIGT CPF YKFGT YKVJ ITQYVJ 6JG DQPGU QH VJG NQYGT NGI ITQY OQUV PQVKEGCDN[ CTQWPF VJG MPGG 5QOG DQPGU NKMG VJG RGNXKU MPGG CPF JGGN DQPGU JCXG URGEKCN ITQYVJ RNCVG CTGCU YJGTG UVTQPI OWUENGU CPF NKICOGPVU CVVCEJ ECNNGF CP pCRQRJ[UKUq 6JG ITQYVJ RNCVGU CTG YGCMGT VJCP VJG NKICOGPVU 1EECUKQPCNN[ C UVTQPI HQTEG ECP RWNN UVTQPIN[ CV VJG CPEJQT RQKPV ECWUKPI RCKP UYGNNKPI CPF YGCMPGUU 6JKU UCXGU VJG NKICOGPV CPF OWUENG HTQO DGKPI FCOCIGF DWV KU RCKPHWN CPF ECWUGU YGCMPGUU QH VJG OWUENG #RQRJ[UKVKU UKVGU CTG FKUEWUUGF C NKVVNG NCVGT

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MUSCLES

14

5VTQPI UMGNGVCN OWUENGU CTG GUUGPVKCN HQT IQQF OQXGOGPV 2QQT OWUENG FGXGNQROGPV CPF RQQT Æ‚VPGUU KU CUUQEKCVGF YKVJ RQQTGT NQPI VGTO JGCNVJ +V KU PQV RQUUKDNG VQ DWNM OWUENGU WPVKN RWDGTV[ JGPEG KV KU TGEQOOGPFGF HTGG YGKIJVU CPF C XCTKGV[ QH CEVKXKVKGU TCVJGT VJCP OCEJKPGU CPF URGEKCNK\GF URQTVU CTG GORNQ[GF RTKQT VQ RWDGTV[ CRRTQZ [GCTU # ITGCV XCTKGV[ QH CEVKXKVKGU GUVCDNKUJGU VJG HTCOGYQTM HQT IQQF UVTQPI OWUENG Æ‚DTG FGXGNQROGPV 'FWECVKQP CPF CYCTGPGUU QH ITQYVJ URWTVU KU KORQTVCPV CU Æ‚VPGUU KU PGGFGF HQT NQPI VGTO JGCNVJ )CKPKPI UMKNNU VJTQWIJ C XCTKGV[ QH URQTVU DGHQTG C EJKNF KU [GCTU QNF JGNRU UMKNNU CPF YQTMU CNN OWUENGU +V KU KORQTVCPV VQ DG CYCTG QH ITQYVJ URWTVU DWV PQV YQTT[ CDQWV VJGO

6GNN [QWT RJ[UKQVJGTCRKUV CPF FQEVQT KH [QWT EJKNF KU ITQYKPI TCRKFN[ 9QTM NKHG RTGUUWTGU ECP OGCP KV KU FKHÆ‚EWNV HQT RCTGPVU VQ RTQXKFG VJGKT EJKNF YKVJ C NCTIG XCTKGV[ QH CEVKXKVKGU DWV XCTKGV[ GPJCPEGU UVTQPI FGXGNQROGPV QH OCP[ NGI CTO CPF VTWPM OWUENGU CPF CUUKUVU VJG DQF[ VQ FGXGNQR EQ QTFKPCVKQP DCNCPEG CPF UVTGPIVJ GROWTH SPURTS

Adults shrink, only children grow. # ITQYVJ URWTV CTQWPF [GCTU KP DQ[U RQUGU UQOG TKUMU VQ EJKNFTGP CPF CFQNGUEGPVU CU DQPGU ITQY CV FKHHGTGPV TCVGU VQ OWUENGU 6JG GCTN[ RCTV QH C RTG RWDGTVCN ITQYVJ URWTV KU OCTMGF D[ TCRKF ITQYVJ QH VJG NGIU 6JG FKHHGTGPEG DGVYGGP VJG DQPG CPF OWUENG ITQYVJ ECP ETGCVG RTQDNGOU YKVJ IGPGTCN ƃGZKDKNKV[ EQ QTFKPCVKQP OWUENG RQYGT CPF UVTGPIVJ Children and adolescents can become clumsy during periods of growth. They are more at risk of injury. /GEJCPKECN UVTGUU VTCEVKQPKPI RWNNKPI CPF VWIIKPI QHVGP FWG VQ QXGT WUG D[ VTCKPKPI VJG UCOG OWUENGU VQQ HTGSWGPVN[ ECP ECWUG QXGT WUG RCKP 6JKU KU ECNNGF traction apophysitis CPF ECP QEEWT CV UKVGU EQOOQPN[ CHHGEVGF D[ JCGOQRJKNKC UWEJ CU VJG GNDQY CPMNG CPF MPGG # UWFFGP UVTQPI CPF HQTEGHWN CEVKQP QH C OWUENG VJCV CVVCEJGU VQ VJG UQHV CTGC QH VJG ITQYVJ RNCVG OC[ ECWUG VJCV CVVCEJOGPV CTGC VQ RWNN QHH EQORNGVGN[ 6JKU KU MPQYP CU CP avulsion fracture. +P VJG RGNXKE CTGC VJKU ECP DG YJGP OWUENGU QH VJG VTWPM CVVCEJ CV VJG KNKCE ETGUV +H VJG[ CTG QXGT YQTMGF QT YQTMGF UWFFGPN[ RCKP ECP QEEWT CNQPI VJKU CTGC 6JG +UEJKCN VWDGTQUKV[ JCU VJG JCOUVTKPI OWUENGU CVVCEJGF VQ KV 1XGT UVTGVEJKPI QT C UWFFGP OQXGOGPV CICKPUV HQTEG ECP ECWUG CP CXWNUKQP HTCEVWTG

2J[UKQVJGTCRKUVU QHVGP YCPV VQ MPQY pJQY VJG KPLWT[ JCRRGPGFq CPF pYJCV YJGTG [QW FQKPI YJGPe q 6JKU is to try and determine if the sudden pain is a bleed QT UQOGVJKPI GNUG 5QOGVKOGU : TC[U CTG TGSWKTGF VQ FGVGTOKPG KH VJG RCKP KU FWG VQ C HTCEVWTG /CP[ VJKPIU ECP ECWUG RCKP PQV LWUV C DNGGF #V VJG MPGG VJGTG CTG VYQ EQOOQP UKVGU VJCV ECP DGEQOG UQTG CPF RCKPHWN 6JG PCOGU CVVCEJGF VQ VJGUG KPLWTKGU CTG 1UIQQF 5EJNCVVGT FKUGCUG CPF 5KPFKPI .CTUGP FKUGCUG 6JG[ CTG NQECNN[ RCKPHWN ECP DG UQTG YKVJ TWPPKPI YJGP VQWEJGF CPF YQTMKPI VJG SWCFU

SWCFTKEGRU HGOQTKU OWUENGU 6JGUG KPLWTKGU CTG WUWCNN[ FWG VQ QXGT WUG CPF VKIJV OWUENGU &QYP CV VJG HQQV VJG JGGN TGCEVU VQ VKIJV ECNH OWUENGU RWNNKPI QP DQPG HQT GZCORNG YKVJ TWPPKPI LWORKPI QT GXGP YCNMKPI 6JKU ECP TGUWNV KP RCKP UYGNNKPI CPF KU QHVGP YQTUG CHVGT TGUV CICKP WUWCNN[ YJGP OWUENGU CTG VKIJV RWNNKPI CPF VWIIKPI QEEWTU .QECN RCKP UQOGVKOGU UVKHHPGUU CPF UYGNNKPI ECP TGUWNV

Children with suspected bleeds should always be reviewed. Growth spurts are times when other issues arise and proper assessment is critical.

True joint bleeds improve with factor replacement therapy. They require proper PRICE (Protection Rest Ice Compression Elevation) and rehabilitation afterwards to KORTQXG VJG OWUENG RQYGT UVTGPIVJ CPF ƃGZKDKNKV[ VJCV is always lost after a bleed. # RGTKQF QH TGNCVKXG TGUV CPF URGEKƂE GZGTEKUGU CTG TGSWKTGF HQT CRQRJ[UKVKU CPF ITQYVJ RNCVG KPLWTKGU 6JG[ OC[ GXGP TGSWKTG CP QTVJQRCGFKE TGXKGY CPF CP : TC[ CHILDHOOD HIP ISSUES

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

6JG CDQXG KPLWTKGU TGNCVG VQ VKIJV OWUENGU RWNNKPI QP UQHVGT DQP[ ITQYVJ RNCVGU FWTKPI C RGTKQF QH ITQYVJ QT C UWFFGP CEVKQP QH VJG OWUENG YJKEJ ECP RWNN VJG UQHV DQPG QHH KVU JCTFGT DCUG 6JG[ IGPGTCNN[ ECWUG NQECN VGPFGTPGUU UYGNNKPI QT RCKP not YJQNG MPGG Children should never have a temperature or UYGNNKPI CU KP C DNGGF HQT GZCORNG C NQECN CTGC QH RCKP be unwell with a haemophilic bleed.

CV VJG JGGN QT WPFGT VJG CTEJ not VJG YJQNG CPMNG 6JG[ ECP JWTV CPF NGCF VQ [QW DGKPI WPCDNG VQ NKHV C NGI QT $Q[U [GCTU QNF CTG OQTG NKMGN[ VJCP C IKTN VQ YCNM 6JG[ TGSWKTG RTQRGT CUUGUUOGPV FGXGNQR C UNKR QH RCTV QH VJG JKR DQPG C slipped upper capital femoral epiphysis 6JKU ECP QEEWT UWFFGPN[ (CEVQT TGRNCEGOGPV VJGTCR[ OC[ OCMG UQOG FKHHGTGPEG FWG VQ RGTJCRU UQOG DNGGFKPI QH VJG DQF[ CPF VJG[ YKNN JCXG C SWKEM QPUGV QH RCKP CPF NQUU QH OQXGOGPV CPF HWPEVKQP QT KV ECP QEEWT ITCFWCNN[ RCTV KPXQNXGF DWV KV YKNN PQV DG VJG UCOG CU KP C DNGGF QXGT VKOG $QVJ TGUWNV KP TGUVTKEVGF JKR OQXGOGPVU VQ C LQKPV QT OWUENG 6JG RTQDNGO YKNN TGQEEWT CPF PQV 5QOGVKOGU VJG NGI OC[ CRRGCT UJQTVGT CPF VJG EJKNF UGVVNG YKVJ TG WUG

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6JG CPVGTKQT UWRGTKQT KNKCE URKPG JCU VJG UCTVQTKWU OWUENG C JKR NKHVKPI ƃGZQT CPF VWTPKPI OWUENG YJKEJ ECP CNUQ FGVCEJ RCTV QH VJG DQPG YJGP VJG NGI MKEMU C JGCX[ YGV DCNN QT VJG JCTF ITQWPF

15

YKNN NKOR 6JGTG KU C JGKIJVGPGF TKUM KH EJKNFTGP CTG QXGTYGKIJV 6TGCVOGPV KU IGPGTCNN[ UWTIKECN Some children will complain of knee pain when the problem is actually in the hip joint. Both joints should always be checked. $Q[U [GCTU QNF OQTG VJCP IKTNU ECP FGXGNQR 2GTVJGU CPQVJGT JKR EQPFKVKQP YKVJ NKORKPI RGTUKUVGPV RCKP CPF TGUVTKEVGF JKR OQXGOGPVU 2GTVJGU QHVGP QEEWTU ITCFWCNN[ If a child has a slipped upper capital femoral epiphysis or Perthes, they will not respond to factor replacement therapy. If they have a bleed, children should always improve and continue to improve if given factor.

FEET

(NCV HGGV YJKEJ CTG PQTOCN KP EJKNFTGP WPVKN CTQWPF [GCTU ECP UQOGVKOGU NGCF VQ UVKHH HGGV KP CFQNGUEGPEG 9J[ VJKU QEEWTU KP WPMPQYP CPF KV KU PQV EQOOQP 9JGP CUMGF VQ UVCPF QP VKR VQGU EJKNFTGP YKVJ UVKHH HGGV FQPoV UJQY VJG PCVWTCN CTEJ VJCV OQUV RGQRNG IGV #P QTVJQRCGFKE TGXKGY OC[ DG TGSWKTGF KH VJGKT HGGV CTG ECWUKPI RTQDNGOU JCXG ECNNWUGU GVE

5EQNKQUKU

SPINES

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%JKNFTGPoU URKPGU CTG ITQYKPI UQ RQUVWTG KU EQPUVCPVN[ EJCPIKPI /QTG IKTNU VJCP DQ[U FGXGNQR C UKFGYC[U EWTXG KP VJGKT URKPG ECNNGF C UEQNKQUKU DWV DQ[U ECP DGEQOG XGT[ TQWPF UJQWNFGTGF QT M[RJQVKE 6JG[ ECP CNUQ FGXGNQR C UEQNKQUKU 6JGUG URKPG EQPFKVKQPU OC[ DGEQOG RTQDNGOCVKE KH VJG[ EQPVKPWG VQ FGXGNQR YKVJ ITQYVJ 1HVGP VJG[ CTG JKFFGP WPFGT ENQVJGU UQ JCXG C NQQM CV [QWT EJKNFoU URKPG KP UWOOGT YJGP VJG[ CTG NGUU NKMGN[ VQ JCXG UQ OCP[ VJKEM layers on.

16

IN SUMMARY

'PLQ[ YCVEJKPI [QWT EJKNF ITQY +VoU CP COC\KPI RTQEGUU HWNN QH LQ[U CU VJG[ DGEQOG DGVVGT CV UMKNNU CPF EQPSWGT PGY CEVKXKVKGU $G CYCTG VJCV CNN CEJGU CPF RCKPU OC[ PQV DG DNGGFU 6CMG PQVG QH VJG DNWG CNGTV DQZGU ee Contact your HTC if the “pattern� of the problem is different to a normal bleed or if the problem doesn’t settle or if the problem reoccurs. Act, don’t wait!

.QTGVVC 4KNG[ KU #FXCPEGF 5QEKCN 9QTMGT CV VJG 3WGGPUNCPF *CGOQRJKNKC %GPVTG 4Q[CN $TKUDCPG CPF 9QOGPoU *QURKVCN

Loretta Riley

$GHQTG + UJCTG O[ NGCTPKPIU HQT VJQUG YJQ OC[ DG WPUWTG QH YJCV nVTCPUKVKQPo KU s KV KU C ITCFWCN EQQTFKPCVGF RTQEGUU YJKEJ KPXQNXGU C [QWPI RGTUQP VJGKT HCOKNKGU QT ECTGTU CPF JGCNVJ RTQHGUUKQPCNU YJKEJ TGUWNVU KP C [QWPI RGTUQPoU ECTG DGKPI VTCPUHGTTGF VQ KP QWT UKVWCVKQP VJG CFWNV *CGOQRJKNKC 6TGCVOGPV %GPVTG BE PREPARED OR PLAN AHEAD

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

2NCPPKPI CJGCF CNNQYU [QW VQ RTCEVKEG UQOG VJKPIU DGHQTG [QWT ECTG OQXGU VQ VJG CFWNV JQURKVCN ;QW ECP RTCEVKEG DGKPI RTGRCTGF HQT [QWT CRRQKPVOGPVU HQT GZCORNG JCXKPI CNN [QWT KPHQTOCVKQP WR VQ FCVG KP /[#$&4 $[ JCXKPI C NKUV QH SWGUVKQPU VQ CUM QT VJKPIU VQ TGOGODGT VJCV [QW VCMG YKVJ [QW VQ [QWT CRRQKPVOGPVU KV ECP JGNR YKVJ TGOGODGTKPI VJKPIU that happen months earlier and may also help you to HGGN OQTG EQPÆ‚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the adult hospital.

SET GOALS

+P VTCPUKVKQP CU KP OCP[ CTGCU QH NKHG KV KU JGNRHWN VQ UGV IQCNU CPF [QW ECP FQ VJKU GCTN[ CU YGNN 6JGTG KU PQ PGGF VQ UGV C NQV QH IQCNU VQ CEJKGXG DGHQTG [QW VWTP s UQOG [QW YKNN CNTGCF[ DG YQTMKPI QP UQOG [QW ECP MGGR YQTMKPI QP YJGP [QW VTCPUKVKQP CETQUU VQ VJG CFWNV %GPVTG +P YTKVKPI DQQMNGVU VJKU CTVKENG KP O[ YQTM KV JCU JGNRGF OG VQ OGGV VKOGNKPGU GURGEKCNN[ YJGP + CO HGGNKPI C NKVVNG QXGTYJGNOGF +V YQTMU DGUV YJGP + DTGCM VJG IQCNU KPVQ UOCNNGT IQCNU YJKEJ CTG OQTG OCPCIGCDNG ;QW OC[ JCXG JGCTF QH 5/#46 IQCNU )QCNU YQTM OQTG GHHGEVKXGN[

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+ CO KP VJG RTQEGUU QH YTKVKPI C DQQMNGV HQT [QWPI CFWNVU YJQ JCXG VTCPUHGTTGF VQ VJG 4Q[CN $TKUDCPG CPF 9QOGPoU *QURKVCN 9JGP + YCU CUMGF VQ WVKNKUG VJKU MPQYNGFIG VQ YTKVG CP CTVKENG HQT National Haemophilia, C EQNNGCIWG QH OKPG CV VJG .CF[ %KNGPVQ %JKNFTGPoU *QURKVCN CUMGF OG YJGVJGT + PQVKEGF CP[ RCTCNNGNU DGVYGGP YTKVKPI VJKU DQQMNGV CPF VJG RTQEGUU QH VTCPUKVKQP #HVGT VJKPMKPI CDQWV KV HQT C YJKNG + TGCNKUGF VJCV VJGTG YCU

17

YJGP VJG[ CTG 5RGEKÆ‚E Measurable, Achievable, Relevant/Realistic and Time Bound 5Q HQT YTKVKPI VJG VTCPUKVKQP DQQMNGV + JCF C ITCPF RNCP VQ JCXG VJG DQQMNGV EQORNGVGF RTKPVGF CPF UGPV QWV D[ ,CPWCT[ + UVCTVGF KV KP NCVG 5GRVGODGT 6JKU YCUPoV TGCNKUVKE KP VJG GPF + FKFPoV HCEVQT KP CNN VJG GZVTC TGUGCTEJ + PGGFGF VQ FQ QT VJG RTQEGUUGU KPXQNXGF KP JCXKPI KV TGXKGYGF + CNUQ FKFPoV JCXG WPKPVGTTWRVGF VKOG s + JCF VQ MGGR FQKPI CNN VJG QVJGT DKVU QH O[ LQD 5Q + TGXKGYGF O[ IQCNU Æ‚ZGF WR O[ VKOGHTCOGU CPF NQQMGF CV KV OQTG TGCNKUVKECNN[ 9G WPFGTUVCPF VJCV UQOGVKOGU VJKPIU JCRRGP DG[QPF [QWT EQPVTQN

RNCPPGF VQ FQ UQ + JCXG C PWODGT QH UVTCVGIKGU VQ JGNR +P YTKVKPI VJG DQQMNGV + DQQMGF CRRQKPVOGPVU KPVQ O[ ECNGPFCT YTQVG O[UGNH nVQ FQ NKUVUo CPF VKEMGF VJGO QHH YJGP + EQORNGVGF GCEJ VCUM + CNUQ WUGF RQUV KV PQVGU YJKEJ YGTG JGNRHWN YJGP VJG[ UVC[GF YJGTG VJG[ YGTG UWRRQUGF VQ 6JG UCOG KFGCU ECP DG CRRNKGF VQ RTGRCTKPI HQT VTCPUKVKQP CPF DG[QPF

N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

9TKVKPI CRRQKPVOGPVU KPVQ C FKCT[ QP C ECNGPFCT QT KPVQ [QWT UOCTV RJQPG ECNGPFCT CTG CNN JGNRHWN VQQNU CU NQPI CU [QW TGIWNCTN[ NQQM CV [QWT FKCT[ HQT GZCORNG 7UKPI VJG /[#$&4 CRR QT YGDUKVG CNUQ JGNRU [QW MGGR C VTCEM 5Q C VTCPUKVKQP IQCN OKIJV DG IQKPI VQ C ENKPKE CRRQKPVOGPV QH YJCV VTGCVOGPV [QW JCXG JCF YJGVJGT [QW JCXG JCF CP[ DNGGFU CPF YJCV [QWT UVQEM NGXGN KU NKMG 2CTGPVU QT QP O[ QYP 5Q KH YG DTGCM KV FQYP KPVQ C UOCNNGT IQCN VQ QVJGT HCOKN[ OGODGTU OC[ DG CDNG VQ CUUKUV [QW YKVJ VJKU CUUKUV YKVJ CEJKGXKPI VJKU QPG GZCORNG OC[ DG KP VJG DGIKPPKPI 6JKU CNUQ JGNRU YKVJ DGKPI RTGRCTGF HQT [QWT ENKPKE CRRQKPVOGPV ;QW OKIJV CNTGCF[ DG WUKPI r 5RGEKƂE s + YKNN CUM VJG RCGFKCVTKE %GPVTG UQOG VQQNU VQ JGNR [QW YKVJ UVWF[ TGOGODGT YJGP [QW FQEVQT QPG SWGUVKQP PGGF VQ FQ [QWT RCTV VKOG LQD QT YJGTG CPF YJGP [QWT URQTV ƂZVWTGU CTG JCRRGPKPI # PWODGT QH VJG VJKPIU [QW r Measurable + YKNN FQ KV CV O[ PGZV ENKPKE FQ VQ JGNR [QW TGOGODGT VJGUG VJKPIU ECP DG WUGF VQ CRRQKPVOGPV CV VJG %JKNFTGPoU *QURKVCN JGNR TGOGODGT [QWT CRRQKPVOGPVU CPF QVJGT VCUMU [QW FQ VQ NQQM CHVGT [QWT JGCNVJ r Achievable s KV KU UQOGVJKPI + ECP FQ + YKNN YTKVG VJG SWGUVKQP FQYP CPF VCMG KV YKVJ OG YOU DON’T HAVE TO GET IT 100% KP ECUG + IGV PGTXQWU

18

r

Relevant/Realistic 6JG FQEVQT CNYC[U CUMU KH + JCXG C SWGUVKQP CPF VCMKPI VJKU UVGR YKNN JGNR OG HGGN OQTG EQPÆ‚FGPV VCNMKPI VQ VJG FQEVQT QP O[ QYP

r

Time bound + JCXG CP CRRQKPVOGPV KP YGGMU UQ + ECP FQ KV VJGP

+V CNUQ OC[ JGNR KH [QW CTG RCTVKEWNCTN[ PGTXQWU VQ RTCEVKEG YKVJ C HCOKN[ OGODGT REMEMBERING TO DO WHAT YOU PLANNED TO DO

+ WUWCNN[ JCXG C PWODGT QH RTQLGEVU RJQPG ECNNU CRRQKPVOGPVU VQ FQ CNN KP VJG UCOG YGGM QT GXGP UCOG FC[ 5QOGVKOGU + HQTIGV VQ FQ UQOG VJKPIU VJCV + JCF

CORRECT THE FIRST (OR SECOND) TIME

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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

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19

2018 GO FOR IT GRANTS 'XGT[QPG GZRGTKGPEGU QDUVCENGU CV UQOG VKOG DWV [QWoNN PGXGT MPQY YJCV [QW ECP QXGTEQOG CPF CEJKGXG WPNGUU [QW Go for it!

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Training Study

Conferences

Business

Go for it Grants

WHO CAN APPLY?

+H [QW JCXG C DNGGFKPI FKUQTFGT QT CTG CHHGEVGF D[ C DNGGFKPI FKUQTFGT VYQ Go For it ITCPVU QH GCEJ CTG CXCKNCDNG 6JG Go for it Grants ECP VCMG [QW QPG UVGR ENQUGT VQ TGCNKUKPI [QWT FTGCO 5GG VJG CRRNKECVKQP HQTO QP YYY JCGOQRJKNKC QTI CW CYCTFU Applications close on 30 August 2018.

NEW ABOUT BLEEDING DISORDERS BROCHURE 'XGT YCPVGF C UKORNG DTQEJWTG CDQWV DNGGFKPI FKUQTFGTU TUUU VQ UJQY RGQRNG CV C HWPFTCKUGT QT RGQRNG KP VJG IGPGTCN TC CN EQOOWPKV[ YJQ CTG KPVGTGUVGF! Ɛ

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20

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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

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21

(QNNQYKPI QP HTQO QWT CTVKENG KP VJG /CTEJ KUUWG of National Haemophilia, one of our youth members, #NCP YJQ JCU UGXGTG JCGOQRJKNKC URQMG VQ WU CDQWV JKU VKRU CPF VTKEMU HQT UWTXKXKPI WPKXGTUKV[ 2TGRCTCVKQP ECP DG VJG MG[ HQT OCMKPI VJG VTCPUKVKQP VQ WPKXGTUKV[ GCUKGT -PQYKPI YJCV UGTXKEGU CPF UWRRQTVU CTG CXCKNCDNG VQ [QW OC[ KPETGCUG [QWT EJCPEGU QH UWEEGUU KP 6#(' QT WPKXGTUKV[

N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

WHY MEET THE DISABILITY TEAM?

22

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STARTING HIGHER EDUCATION

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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8

PEER EDUCATION

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CALENDAR Bleeding Disorders Awareness Week 1EVQDGT 6GN (CZ 'OCKN JHCWUV"JCGOQRJKNKC QTI CW YYY JCGOQRJKNKC QTI CW World Haemophilia Day 17 April 2019 YYY YHJ QTI YJF

ACKNOWLEDGEMENTS *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC *(# CEMPQYNGFIGU HWPFKPI ITCPVU TGEGKXGF HTQO VJG #WUVTCNKCP )QXGTPOGPV &GRCTVOGPV QH *GCNVJ HQT EQOOWPKECVKQPU CPF GFWECVKQP CEVKXKVKGU WPFGTVCMGP D[ VJG *(# UGETGVCTKCV 9G VJCPM VJG KPFKXKFWCNU RJKNCPVJTQRKE VTWUVU CPF EQORCPKGU YJKEJ JCXG OCFG FQPCVKQPU VQ UWRRQTV *(# RTQITCOU CPF VJG HQNNQYKPI EQORCPKGU VJCV URQPUQT GFWECVKQP RTQITCOU EQPHGTGPEGU QT RGGT UWRRQTV RTQITCOU TWP D[ VJG (QWPFCVKQP HQT VJG DNGGFKPI FKUQTFGTU EQOOWPKV[

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5176* #7564#.+# UPDATE 9G YGTG RNGCUGF VQ OGGV WR YKVJ C UVTQPI ITQWR QH EQOOWPKV[ OGODGTU CV VJG +PHQTOCVKQP 'XGPKPI JGNF QP 9QTNF *CGOQRJKNKC &C[ #RTKN JGNF CV VJG 9QOGPUo CPF %JKNFTGPoU *QURKVCN KP #FGNCKFG 6JG GXGPKPI YCU RNCPPGF D[ VJG 5QWVJ #WUVTCNKC *CGOQRJKNKC 6TGCVOGPV 0GVYQTM CPF *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC *(# #P WRFCVG QP VJG CFXCPEGU KP JCGOQRJKNKC VTGCVOGPV CPF ECTG YGTG RTGUGPVGF D[ &T 5KOQP /E4CG &KTGEVQT QH VJG CFWNV *CGOQRJKNKC 6TGCVOGPV %GPVTG CV VJG 4Q[CN #FGNCKFG *QURKVCN /TU #WDWTP /E+PV[TG 2J[UKQVJGTCRKUV CPF &T *GCVJGT 6CRR &KTGEVQT QH VJG *CGOQRJKNKC 6TGCVOGPV %GPVTG CV VJG 9QOGPoUo %JKNFTGPoU *QURKVCN # UOCNN ITQWR HQNNQYGF QP HTQO VJKU VQ CP GXGPKPI QH 6GP 2KP $QYNKPI YJGTG GZRGTKGPEGU CPF RGTUQPCN UVQTKGU QH NKXKPI YKVJ C DNGGFKPI FKUQTFGT YGTG UJCTGF CNQPI YKVJ DQYNKPI UMKNNU 9G NQQM HQTYCTF VQ RWDNKUJKPI TGRQTVU CDQWV VJG HCOKN[ FC[ CV VJG #FGNCKFG <QQ JGNF QP ,WPG KP the next edition of National Haemophilia.

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