Nerve connect
Patient Advocacy Group (PAG) Partner Feature: ACMT-Rete
In an effort to highlight the vital role of our Patient Advocacy Group (PAG) partners in our community, we are launching a new feature in Nerve Connect focused on their contributions and perspectives.
In this edition, we hear from Filippo Genovese, a scientist living with CMT1X who serves as Chief Scientific Officer of the Italian advocacy group ACMT-Rete and President of the European CMT Federation. Filippo brings a unique blend of scientific insight and personal experience to his work, championing patient-centered research, creative outreach, and improved care for those affected by Charcot-Marie-Tooth disease.
Tell us about the ACMT-Rete and how you support patients.
ACMT-Rete is a compassionate Italian non-profit that supports individuals and families affected by Charcot-Marie-Tooth (CMT) disease. Our approach blends scientific advocacy with human-centered creativity. We fund and promote research projects with real clinical impact, supporting the development of therapies that improve patients’ quality of life.
ACMT-Rete also invests in training general practitioners and health professionals, helping ensure earlier diagnosis and more informed care.
Among our non-conventional initiatives is our support for The Ballad of Human Mutations, an art project by Aliteia that challenges aesthetic norms and celebrates genetic diversity—turning fragility into a source of strength and visibility.
What current initiatives are you most excited about?
We’re thrilled to support two impactful initiatives. The first is the two-year research grant awarded to Dr. Yuri Falzone, whose project investigates how somatosensory, vestibular, and strength deficits affect balance in CMT patients. This pioneering study could lead to better rehabilitation strategies and reduce fall risk—an urgent, underexplored issue in CMT care.
The second is “Be a Penguin for Research”, a playful yet powerful campaign. Penguins, despite their clumsy gait, move with resilience and grace—just like many CMTers.By embracing the penguin, the symbol of the CMT community, we celebrate adaptation, raise awareness, and fund research with warmth and creativity.
What would you like PNS members to better understand about the patient experience?
Inviting patients to share their journeys, challenges, and hopes—especially around diagnosis, daily life, and interactions with healthcare professionals—could be a valuable way to improve engagement within the PNS community.
As patients, we’re fortunate to have outstanding researchers and clinicians in the PNS CMTR special interest group (SIG). One area I believe deserves more attention is the communication of genetic diagnosis results. Too often, patients receive emails or letters containing complex information they’re not equipped to interpret.
Within the Euro-NMD ERN, we’re currently working on a report that maps the CMT patient journey; we’ll share it when ready.
By embracing the penguin, the symbol of the CMT community, we celebrate adaptation, raise awareness, and fund research with warmth and creativity.