About Us
SLC6A1 SWITZERLAND is a non-profit association dedicated to improving the lives of people affected by the SLC6A1 neurodevelopmental disorder (SLC6A1-NDD). It was founded in March 2025 with the mission of becoming a point of reference in Switzerland for patients, families, and professionals in the medical and research fields.
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SLC6A1-NDD is a rare condition, affecting approximately one in every 38,000 people. Based on prevalence rates, over 200 individuals in Switzerland are likely to be affected by this disorder, yet only a small fraction of this number has received a confirmed diagnosis. Our organisation is committed to identifying these undiagnosed individuals in order to ensure they receive the support they need.
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We create opportunities for affected families to meet, support one another, and build a sense of community. We want no-one to feel alone in their fight against the disease.
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We work to raise awareness among healthcare professionals so that patients receive timely diagnoses and appropriate treatment. We provide updates on the latest discoveries and are committed to making the most advanced therapies and medical practices used in other parts of the world available in Switzerland.
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Advancing care for our loved ones is only possible through research. That’s why we dedicate our biggest efforts to supporting scientists who focus on SLC6A1. We support research projects in Switzerland and promote involvement in international initiatives by assisting researchers and specialized physicians.
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Our strength lies in our global network. SLC6A1 SWITZERLAND is part of the SLC6A1 EUROPE Alliance, which closely collaborates with SLC6A1 CONNECT (USA). We are also watching with great interest the progress of research being conducted in Australia and around the rest of the world. We are one global team united by a single goal: to find targeted therapies for SLC6A1-related disorders.
SLC6A1 SWITZERLAND is a proud member of ProRaris, an alliance that brings together numerous organizations dedicated to rare diseases across Switzerland.
ProRaris serves as our collective voice at the political level, advocating for stronger involvement of patients and patient associations in shaping national health and pharmaceutical policies.
ProRaris is committed to improving access to timely diagnoses and appropriate care for people living with rare diseases — including the most advanced drug treatments and gene therapies.
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Being part of this important alliance is essential for SLC6A1 SWITZERLAND, and we sincerely thank ProRaris for welcoming us as active members.
SLC6A1 SWITZERLAND is also a member of EURORDIS, the European Rare Disease Network. Membership enables us to stay informed about international initiatives, collaborate with like-minded organizations, and actively contribute to the advancement of research and care at the European level.
Michelle Aldini Parise
Founder of SLC6A1 Switzerland
I never imagined that life would lead me here, to founding — with the valuable support of our members — SLC6A1 Switzerland. Some challenges arrive without warning and change our path forever.
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My name is Michelle Aldini Parise, I am a trained social worker and I have extensive experience working with people with disabilities. After the birth of our first child, my husband and I joyfully adopted two girls with Down syndrome. However, when Giulia, the younger of the two, was diagnosed with the SLC6A1 mutation, our journey took a new, unexpected and very challenging direction.
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I did not feel prepared to deal with what was happening. Giulia's health and behaviour required constant attention, which took up most of my days. At the same time, I found myself catapulted into a complex world: medicine and neuroscience, pharmacotherapy, scientific research, the role of patient associations, regulations, laws, data collection, the processes necessary for the development and approval of drugs, and much more.
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In all this, however, I found something positive and extremely motivating: the field of rare diseases is going through an unprecedented phase of acceleration. Scientific research is progressing rapidly, and numerous innovative therapies are emerging. Today, it is possible to treat rare genetic diseases that, until recently, were considered incurable.
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I looked with great admiration at the extraordinary work of the global SLC6A1 community, which has managed, in just a few years, to become a strong and reliable partner for researchers and the pharmaceutical industry.
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The more I learned to navigate this complex system, the clearer it became how essential it was to give a voice to affected families in Switzerland as well. With a deep sense of responsibility and with the precious help of our supporting members, I founded SLC6A1 Switzerland: a heartfelt initiative inspired by our will to move forward and by the hope for a brighter future for our children.