Kaerus Bioscience | For Patients

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Patient Resources

Fragile X Organizations

These non-profit organizations are working tirelessly on behalf of the Fragile X syndrome (FXS) community globally. They are essential partners to families, researchers, and companies like Kaerus working to improve awareness of FXS, supporting and shaping research towards treatments. They are excellent sources of information and support for families, clinicians and researchers.

The FRAXA Research Foundation mission is to find effective treatments and ultimately a cure for Fragile X syndrome. FRAXA directly funds research, and partners with biomedical and pharmaceutical companies, large and small, to bridge the gap between research discoveries and actual treatments.

The National Fragile X Foundation serves the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved. Their mission is to support the Fragile X community through advocacy, education, research, and treatment.

The Fragile X International is a network of country family organizations who work together to promote, support and strengthen the FX identity as an added value to society. They celebrate and support those living with Fragile X Syndrome and Fragile X Premutation Associated Conditions around the world.

The Fragile X Society (UK) aims to improve the lives of those affected by Fragile X and associated conditions by providing information and continued support to families and professionals they work with. The Society supports an inclusive community of people who understand the specific needs of Fragile X.

KCNMA1-linked Conditions

The KCNMA1 Channelopathy International Advocacy Foundation (KCIAF.org) works to educate patients, families, the public and the scientific community about KCNMA1-associated conditions. The organization encourages and promotes efforts to find effective treatments for individuals with KCNMA1 mutations.

RARE Disease Foundations

These non-profit organizations are working tirelessly on behalf of the RARE disease communities globally. They are essential partners to both families and researchers, working to improve awareness of FXS, supporting and shaping research towards treatments, and are excellent sources of information and resources for families, clinicians and researchers.

Global Genes provides patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core.

The EveryLife Foundation for Rare Diseases is working to empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

The National Organization for Rare Disorders (NORD) is advancing practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, they elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.

Clinical Trials in Fragile X

Clinical trials focused on investigating new treatments and interventions for Fragile X syndrome are being conducted by academic and industry researchers across the globe. The links below provide free access to registries of current and past trials focused on Fragile X syndrome. These are free, publicly-accessible resources maintained by government health agencies in North America and Europe.

ClinicalTrials.gov is a website of the US National Institutes of Health (NIH), maintained by the National Library of Medicine, that provides patients, caregivers, health care professionals, and the public with current information on privately and publicly funded clinical studies conducted around the world.

Learn about clinical trials in FXS in the EU Clinical Trials Register. This searchable database, maintained by the European Medicines Agency (EMA), contains information on interventional clinical trials on medicines conducted in the European Union (EU), or the European Economic Area (EEA) which started after 1 May 2004.

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Reach out to learn more

Connect with Kaerus to learn more about our company’s targeted therapeutics programs for Fragile X Syndrome and other rare neurodevelopmental disorders.

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