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Table 1 Results from ERN-EuroBloodNet Education Survey Needs for patients’ representatives with SCD in order of priority

From: Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

1

New therapies for SCD

2

Adult patients quality of life

3

BMT: survival infertility and other complications

4

Neurological complications in SCD

5

Neonatal screening

6

Gestational risk

7

SCD and immune disease

8

Genetic counselling

9

Hydroxyurea and fertility

10

Polyuria and Enuresis: kidney damages

11

Priapism

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172