TOGETHER WE ARE STRONGER, OUR VOICES LOUDER, AND THE SYNERGY OF OUR ACTIONS MORE POWERFUL.
FUNDACION LIBELLAS is powered by families, all around the world, united in our mission to raise awareness and accelerate research to find a cure.
This Familiy Advisory Council serves in a voluntary role to advises our Patronate and our Research Committe from a parent/family perspective on the NALCN Conditions: CLIFAHDD and IHPRF (Type 1 and 2) Sindromes. (NALCN/UNC80 genes)
COLETTE JESSUP
ENGLAND
JANE GRIFFITHS
AUSTRALIA
ALYSIA LYNN
EEUU
ALISON NICOLSON
SCOTLAND
PATRICIA CAMPBELL
EEUU
SARAH SULLIVAN
EEUU
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Support groups help families living with RARE DISEASES find a sense of community
Know the journey to a rare diagnosis with the testimonies of some families. Make click on the image.
