RareSpeak
About RareSpeak
Mission and Vission

About RareSpeak

RareSpeak is dedicated to building a future where everyone affected by spinal muscular atrophy (SMA) can lead independent, fulfilling lives. Our mission is to foster a supportive community where every voice is heard, and all members feel valued. RareSpeak offers practical support programs tailored to our community’s needs and actively advocates on their behalf. We spearhead comprehensive research to drive advancements in treatment, and we work to improve access to high-quality care. Our commitment remains unwavering until we find a cure.

Our Dedication to Diversity, Equity, and Inclusion

RareSpeak is dedicated to cultivating an inclusive culture where diverse life experiences and perspectives are respected and valued. By embracing these differences, we create an environment that encourages open dialogue and collaboration. This foundation fosters the sharing of knowledge and education, which in turn drives the development of innovative solutions that meet and surpass the needs of the RareSpeak community and our team members, empowering them to achieve their goals.

Our Values

innovation

Innovation

Our dedication to a cure goes beyond just searching for solutions—it’s about creating them. We are collaborating with some of the brightest minds to explore a variety of approaches and support the most promising discoveries and methods.

balance

Balance

As dedicated as we are to finding solutions, we approach the challenge with a clear strategy. We believe the best way to shape a better future for those affected by SMA is by adopting a thorough, impartial approach to research, balancing both hope and realism.

collaboration

Collaboration

Our community is at the heart of everything we do. We owe our progress to the invaluable support from our researchers, doctors, individuals with SMA, and their families. Together, we are—and will always remain—stronger than SMA.

respect

Respect

There isn’t a single way to live with a condition like SMA. Each person’s journey is unique, and it’s up to every individual to determine what SMA means to them.

compassion

Compassion

Thanks to the RareSpeak community, no one has to face this disease alone. We provide unwavering support to individuals with SMA, ensuring open, honest communication and delivering clear, accurate information.

determination

Determination

We won’t stop until we find a cure, and we are committed to continuing this fight with unwavering determination. No matter the obstacles or challenges that come our way, we will remain steadfast in our mission to make a difference.

Editorial and Fact-Checking Process

Each piece of content is carefully chosen and crafted with the RareSpeak community in mind. Sources for news stories and resource pages include peer-reviewed studies, press releases, announcements, interviews, webinars, and conference sessions, among others. All articles undergo a thorough fact-checking and editing process to ensure they are accurate, balanced, comprehensive, and clearly explained.
Our educational articles are written by SMA patients and caregivers, offering a personal perspective on living with the disease. Their stories provide an honest, first-hand account of various aspects of the condition while also offering encouragement and hope to the patient community. Although many of the columns are opinion-based, each one still undergoes an extensive editing and fact-checking process to ensure clarity, accuracy, and fairness.
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