Family Advisory Council

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

Alysis Lynn

ALYSIA LYNN

EEUU

ALISON NICOLSON

SCOTLAND

PATRICIA CAMPBELL

EEUU

SARAH SULLIVAN

EEUU

EVA KARBAUMER

GERMANY

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COMMITMENT
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Alysis Lynn
ACCOUNTAILITY
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EVA
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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.