Table 3 Demographic characteristics of participants

Number of participants

30

22^a

12

15

79 (77 different people^b)

Type of participant

 Patients

N/A

16

5

N/A

21

 Parents/carers of children aged < 18 years

N/A

5

4

N/A

9

 Parents/carers (e.g. spouses) of adults aged ≥ 18 years

N/A

1

3

N/A

4

 Health care professionals^c,h

15

N/A

N/A

2

17

 Health care professionals employed by charity

2

N/A

N/A

2

4

 Charity representatives^d,h

5

N/A

N/A

8

13

 Commissioners

3

N/A

N/A

3

6

 Multiple professional roles^e

5

N/A

N/A

N/A

5

Age (years)

 18–25

N/A

2

0

N/A

2

 26–59

N/A

16

10

N/A

26

  ≥ 60

N/A

4

2

N/A

6

Diagnosisⁱ

 Rare/ultra-rare condition(s)

N/A

22

12

N/A

34

Attend specialised service^f

 Yes

N/A

14

6

N/A

20

 No

N/A

7

4

N/A

11

 Not sure

N/A

1

2

N/A

3

Locations represented

 National role (UK)

2

0

0

8

10

 National role (England and Wales)

1

0

0

1

2

 National role (England)

5

0

0

3

8

 Scotland

1

0

1

0

2

 Wales

1

1

0

0

2

 East of England

1

2

1

1 ^g

5

 London

4

7

0

0

11

 Yorkshire and the Humber

1

2

0

0

3

 North East of England

1

2

0

0

3

 North of England

1

0

0

0

1

 North West of England

2

3

1

0

6

 South East of England

1

2

3

0

6

 South West of England

4

0

4

1

9

 West Midlands

5

2

1

1

9

 East Midlands

0

1

1

1 ^g

3

Ethnicity

 White

N/A

19

12

N/A

31

 Other

N/A

2

0

N/A

2

 Not specified

N/A

1

0

N/A

1

Who coordinates care?

 Patient/carer

N/A

17

10

N/A

27

 GP

N/A

1

0

N/A

1

 Member of health care team

N/A

1

0

N/A

1

 GP and patient/carer

N/A

2

1

N/A

3

 Other

N/A

1

0

N/A

1

 Don’t know

N/A

0

1

N/A

1