Useful links to patient support groups
We work closely with groups that support the individuals and families affected by Microcephalic Primordial Dwarfism:
Potentials Foundation (USA)
Other useful sources of information include:
Genetic Alliance UK - an alliance of over 200 patient organisations working to improve the lives of patients and families affected by all types of genetic conditions. Provides information, supports families and influences the services needed by these patients.
Rare Disease UK - the national campaign for people with rare diseases and all who support them.
SWAN UK (Syndromes Without A Name) - a support network available for families of children and young adults with undiagnosed genetic conditions in the UK.