  

Rare Disease Day 2016

RDD

"  # 

ASrid"     !

1  

Rare Disease Day 2016
Rare Disease Day 2016
rare is not RARE

28

229

JPA

DIA Japan(NORD)

JCR

RDD

ASrid

RDD Global"  # "     !

2  

RDD
RDD
RDD
RDD

NPO

RDD
RDD
RDD
RDD
RDD
RDD MDS
NPO
RDD

NPO

RDD

NPO

MDS
ASrid

RDD
RDD
RDD
RDD

NPO

RDD

NPO

RDD

RDD

RDD
RDD

iSSN

RDD
RDD

RDD2016 inNPO

RDD
RDD о
RDD

NPO

RDD

NET.RDing

RDDRDDRDD

"  # "     !

3  RDDRDDRDD"  # "     !

4  RDD) (-)),!

)-(!

((1-)),!

)-!

))-

!

()1(,(-1-((1(-1()1 ,Ⅱ"  # "     !

5

  !
-/, -

H9@

(( ,()"  # ()

A5=@ ] Ve[eY4T_ ^Q^^b ^`"     !

6  RDD
RDD2016 in Aomori) (-))/( 10 ((-( 1((1((1( 1( 1(-1(-1/ (,,) ((-RDD)"  # "     !

7 (,0 RDD Tokyo,(A5=@ ]YdceRQSXY[QY /4iQX__ S_"  # (`"     !

8

  RDD
RareDisease Day in iwate) (-)))/!

( 1/ (op()1/ (HAM"  # "     !

9 )/ (H9@(0 -("  #  / (.((A5=@ YgQ^Q^4Y_ _S^ ^`"     !

10  RDD) (-))/!
)

0/(…

"  # "     !

11

  BDC
0/H9@/ ()) .0- 0("  # (,
A5=@ _ [_c [Y4VcY^ d _b`"     !

12  RDDRDD2016 in10) (-))/!

( 1(-1:00/).

( 1!

( 1)

( 1(,1((-1´( 1(-1²²RDDⅣⅣ²RDD²²"  # !

"     !

13 00H9@)()) - ( - -("  #  A5=@ ^Q^Ri_e i4 R_^i ` Q Q _b`"     !

14  RDD
RDD 2016 in) (-))/00.

,)( 1( 1((1()1()1( 1()1( 1)( 1( 1RDD(RDD ) (- Y^)/),²RDD²( 1( 1((1()15@G"  # "     !

15

 ² (()1²()1( 1( 1((00.
H9@,) , )0"  # z/ -A5=@ bTT4YQR [ Y_ QS`"     !

16

  

RDD
RDD2016inRare Disease Day) (-))/( 10- / ,(F88) (,(-1( (/ A5J

8I8F88) (,8I8F88"  # "     !

17

  

EC@0H9@/( (((() ,), /. ,"  # (A5=@ ^Q^Ri_V4Q]QY` Q Q _b`"     !

18

  RDDRDD in) (-))/

01(-1,.

´01)(()0/ ((-1q´

( 1)

()1

( 1(,1RDD Y^)//qq

"  # q"     !

19

  RDD

H9@0 ).

"  # / 0

A5=@ ^Y]_[Q[Q4gQTQ] Y S_]"     !

20

  RDDRDD in) (-))-)0( 1(-1,. .

,:CD,:6)

"  # "     !

21

  :6:6)H9@), (. (0 .)(/ ,- ("  # 

A5=@[YcYTS)(()4 ]QY(S_]"     !

22

  RDD MDS11) (-)

Living with MDS Forum).

( 1:)(,(-1GHF)-(FQb

8Yc Qc8Qi

A8GⅥ)
n“lA8Gl

A8GⅥ

5F88"  # "     !

23

 BDC
H9@ A8G0 /)0/,&D ggg A8Gce``_bd ^ d"  # )) /(/)
A5=@ Y^V_4A8Gce``_bd ^ d"     !

24

  RDDRDD2016 in TOKYO)/))0((1)(1:(-,0zz7F"  # "     !

25 ) 

F88

H_[i_Ⅵ×B5B6KC @YRbQbi(.

F88

F88) (-"  # "     !

26

  ("  # "     !

27

  )F88

"  # "     !

28

  F88×RDD.z z() ,BDC

5GbYT

A5=@ bTT4QcbYT _b"  # "     !

29

  !

( 1RDD) (-))0!

-(-1(!

)/,-)(&Xdd`c1&&ggg VQS R__[ S_]&` b]Q Y^[ `X`3cd_biOVRYT2(/,)/,( /,T2(() 00( ,.0,( ."  # "     !

30Y )) /H9@&:5J() ), )/( )(."  #  

A5=@ c`SS4Si d^S ^`"     !

31

  RDDRDD in) (-))/( 1(,(,1()

RDD in/))/

((767
5@G/”

"  # "     !

32  5@G

D@D@ⅠD@)),,/

D@Ⅳ,H9@(, - (,) /, --,,"  # 

A5=@ QY^Q^b ^4dbe_S^ ^( (`"     !

33

  RDDRDD2016 in) (-))/( 1))/()))/())/Ⅳ ),(,1(0)/,)(( ())/FⅣiRn1
505n1nJ0R

R

10 5
5000 D
55 01
RR0R0D"  # 

0550050
G

100
500
91:

Ⅳ

1

"     !

34

  
2
Ri0RDG

10J019
R0nR00:
9D

RJ:

50D01

"  # "     !

35

  

6105JR0J00G10:

JR1J1R1"  # 5D1509GR09RJ 00R0:0RJ04"     !

36i

  R

D

9R:
379

RR:3,/ /,H9@,/ ).

"  # 8J78) ) ((A5=@YVe^Q^Ri_ [^ 4 YVe]QY^`"     !

37  RDD
rare is not Rare.
) (,(())0( 1(-1))0(01)(1-)) (-,(( 0 (z( 1(,1(,1(-1(-1)!mkyPm)&)0!

(0 )("  # "     !

38

  op!

!

!

!
op

Ⅵ:QS R__[ⅥNNF88"  # "     !

39

 

H9@

 

A5=@ [Yci_e^Q^Ri_eO]Y 4iQX__ S_"  # `"     !

40

  RDD) (-))/( 1‐(-1‐,),,0‐( (, ,,,"  # "     !

41 ,)
H9@ ‐.. ,("  # .

A5=@ cY Q ^Q^b ^4[fT RY_R^`"     !

42

  RDDRDD) (-)-)/((1(,1/ 0(JPA Ⅴ

11ⅣRDD

Ⅴ("  # "     !

43

  Ⅵ
RDD

ⅤⅣRDD

RDD
RDD

BDC- ) /(H9@:., /)) )-0("  # 

A5=@ [ ^Q^b ^4]R_h [i_d_ Y^ d _b`"     !

44

  RDD) (-))0, ,,)(((.

(((,(,((1(.1( (_d_ ]Y^Ⅳ(((.
((,"  # "     !

45  F88,00/)

H9@.) )))

"  # -/

A5=@ _ eb_4[_e^ _b"     !

46

  RDD) (-))0( 1(-1RAKU(n/(Ⅵ,,(-RAKU

"  # "     !

47 -/)-0H9@. ,- ( 00"  # A5=@ b`g 4c[iR e_S^ ^`"     !

48

  ( 1(.1()1(/1RDDRDD in) (-)).

2016!

×.

0,)

/ (MBDC×LYGGBM"  # "     !

49

  ⅣⅣ.
H9@.
/- ),, (0 ."  # A5=@ S_^dQSd4^Q^Ri_ cY ^ ^ d"     !

50

  RDDin) (-))0.

( 1(,1.

(- )0Ⅵ&)/))0in),.

Ⅵ&"  # "     !

51 .

.

H9@/) ) - (0/("  #  (:5J-/) ) - (0/-)0

A5=@ `

b4XYb_^Q^b ^ Y^V_"     !

52

  RDD
rare disease day RDD2016) (-))/!

( 1(/1) (-))0!

(/1))1.,in Yamaguchi(/stluvwx"  # ((1( 1 ,()1(,1"     !

53

  RDD) (-JPAⅤⅤ)Ⅲ"  # .

"     !

54

  )0"  # "     !

55

 r )BDC.,(H9@&:5J/.)(/ ),-"  # .

( (( )0,,,( 0,,.

A5=@ i_bQ^

Y_^4iQX__ S_"     !

56`  RDD
Rare Disease Day 2016in) (-))/( 175HI(,1.0-.

(((z@Yf)/)RDD) (-)/CATVCATV82RDD) (-"  # "     !

57

  RareDisease Day ) (Y^)RDD/.

)※※

"  # "     !

58

  @=I9F88

"  # "     !

59

  ´
(),.
/0.0
H9@&:5J-.

(0/0 0 ( ,),(A5=@ [_X^_4 YR"  # SQdf ^`"     !

60

  RDD о) (-))/( 1()1о..

,( 1((1((1()1оо"  # "     !

61

  ..( () ) оH9@&:5J// -0)"  # (-"     !

62

  RDD
RDD2016 in Kochi) (-))0()1./( ((((-1zF H

5 =“DVDRDD

RDD2016 inKochi

"  # "     !

63  H=“Ⅵ"  # "     !

64  (BDCF88) (- Y^?_SXY"  # "     !

65

  BDC./H9@-)(// /,, -),/"  # (- (A5=@ i_[_ bY ce^)4 ]QYS_]

"     !

66  RDDSign) (-))/( 1)(,1((1)/,(/( /-)( / (F88) (,( .

()cY ^]YX_ ^_j_]Y∀´F88

B9H F8Y^"  # "     !

67 )/))/

 ( 1(,1())/,(,"  # "     !

68  ]YX_ ^_j_]Y
B9H F8Y^
Ⅵ^_j_]Y)
RDD"  # "     !

69

  

B9H F8Y^H9@0)n0/ n( (/:5JA5=@ bTY^ Ve[e_[Q4 ]QY"  # 0)n0/ n(..,S_]"     !

70  RDDRDD2016 in) (-))0( 1(01)/,0 / .

. -RDDF88

"  # "     !

71  ()(- , /F88/,0z 0),
H9@(. (0,. - (- /"  # 

A5=@ c_^_ Y ]eceXY4 ]QYS_]

"     !

72

  RDDRDD) () (-)))))))0)- (/ (0-,() (-/-) 0.() (-/-) /,.
)//-)) (-)-))) (,, ( (( 1Ⅴ) (-))/((1Ⅴ) (-))0( 1ⅤⅤ×"  # "     !

73

 "  #  "     !

74

  ⅤⅤⅤ"  # "     !

75

 /-0-(‐A5=@ ie[Y ^Q4f cdQ _S^ ^"  #  ( (/`"     !

76  RDD
RDD2016 in) (-))// ()-( 1(,1, . ()( 1( 1(( 1((,1´´)/))/( 1(,1:´( 1( 1(( 1(( 1( 1( 1( 1( 1(( 1((,1@=I9² :CD²²²²"  # "     !

77

 ² −²(,1(,1(´,()(a/ (H9@)000

"  # ( .0 ( (/ ()A5=@ XYb_cXYOcXY]_TQOR]c ( 4iQX__ S_`"     !

78

  RDD) (-))0((1(,1s//tu.

´so((p/((()1( 1)()( 1(,1´t(,r(,r(,)(,(,(,´u(3!

"  # "     !

79  Ⅵ//.

H9@0/, ("  # )(:5J0/,)))( .-..

A5=@ ]YiQ^Q^ S4RYbT _S^ ^"     !

80`  RDDRDD in) (-))/!

/0) /(-()((,(Ⅰ×3-Ⅰ"  # "     !

81  ×RDD
RDD

F88

RDD

F88
H9@0 , .

"  # (,)(

A5=@ bTT [Q _cXY]Q4 ]QYS_]

"     !

82

  RDDRDD2016 in) (-))0( 1(.1(:0 ( (("  # "     !

83  BDC0(H9@0/ 0,("  # ),-.

)0

A5=@ Y^V_4Q]RYdY_ec _b)(:`"     !

84 RDD NPO
113-0033
205NPORDD Japanrdd@asrid.org

e-mailRDD Japan"  # "     !

85