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

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JANE GRIFFITHS

PATRICK CROWDER

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Alysis Lynn

ALYSIA LYNN

WORKING TOGETHER IS CRITICAL FOR SUCCESS

Support groups help families living with RARE DISEASES find a sense of community

Know the journey to a rare diagnosis with the testimonies of families. Make click on the image of testimonies.