Chromosome 18 Registry & Research Society - San Antonio, Texas

The Chromosome 18 Registry & Research Society: A Dedicated Resource

The Chromosome 18 Registry & Research Society is a respected non-profit organization dedicated to providing comprehensive support and resources for individuals and families affected by chromosome 18 conditions. Located at 7155 Oakridge Dr, San Antonio, TX 78229, and reachable by phone at 2106574968, the organization serves as a vital hub for information, research, and community engagement. Their website, chromosome18.org, offers a wealth of materials accessible to a broad audience, including medical professionals, educators, and families seeking to understand and support loved ones with these conditions.

Mission and Specializations

The Society’s core mission revolves around fostering a deeper understanding of chromosome 18-related disorders and improving the lives of those affected. It achieves this through a multi-faceted approach encompassing several key areas. Primarily, it operates as a charity, channeling funds and resources towards crucial research initiatives. Secondly, it functions as a disability services and support organization, providing practical assistance and emotional support to families navigating the challenges associated with these conditions. Furthermore, the Registry acts as a distance learning center, offering educational programs and workshops designed to enhance knowledge and awareness among caregivers, educators, and healthcare providers. Finally, it is a research foundation, directly funding and promoting scientific investigations into the causes, diagnosis, and potential treatments for these complex genetic disorders.

Key Features and Accessibility

The Registry distinguishes itself through several important features. Its website, chromosome18.org, is meticulously curated and regularly updated with the latest research findings, clinical guidelines, and patient resources. A significant portion of the site is dedicated to providing detailed information about specific chromosome 18 conditions, including their associated symptoms, diagnostic procedures, and management strategies. The organization also maintains a comprehensive database of researchers and clinicians specializing in this field, facilitating connections and collaborations. Beyond its digital presence, the Registry is committed to ensuring accessibility for all. The facility located at 7155 Oakridge Dr boasts a wheelchair accessible entrance, demonstrating a commitment to inclusivity. A wheelchair accessible parking lot further enhances the organization’s accessibility for individuals with mobility challenges. This commitment to physical accessibility reflects a broader dedication to removing barriers and fostering a welcoming environment for all visitors.

Information for Prospective Users

For individuals seeking information about chromosome 18 conditions, the Registry offers an invaluable resource. The website provides a clear and concise overview of the various disorders associated with this chromosome, helping individuals and families understand the potential challenges and opportunities. It serves as a safe and inviting space for those seeking emotional support and connection with others facing similar circumstances. Medical professionals will find the Registry particularly useful, as it provides access to the latest research findings and clinical guidelines. Educators can leverage the resources available on the site to better understand the needs of students with these conditions and create supportive learning environments. The Registry’s goal is to empower individuals and families with the knowledge and resources they need to navigate the complexities of chromosome 18-related disorders.

Community Feedback and Reputation

The Chromosome 18 Registry & Research Society consistently receives positive feedback from its users. Currently, it holds 51 reviews on Google My Business, with an impressive average opinion of 5/5. These reviews consistently highlight the organization’s dedication to providing accurate information, compassionate support, and a welcoming community. Users frequently commend the Registry’s comprehensive resources, the expertise of its staff, and the sense of connection it fosters among families. Many express appreciation for the Registry’s role in raising awareness about these conditions and advocating for improved research and care. The organization's reputation as a reliable and trustworthy source of information is a testament to its commitment to serving the needs of the chromosome 18 community.

👍 Reviews of Chromosome 18 Registry & Research Society

Claudia T.

5/5

The Chromosome 18 Registry is an excellent site for anyone wanting to learn more about individuals born with a chromosome 18 condition. It is a safe and inviting space for families, chock full of information and resources. It is the place to go for doctors, educators, or anyone needing a deeper understanding and appreciation for these individuals and all of the research compiled to date on their behalf.

Matt M.

5/5

Chromosome 18 Registry not only does amazing work, they have become part of our extended family! The service they provide to 18 families is nothing short of stupendous! Keep up the great work Chromosome 18 Registry, you are making a positive difference in the lives of families around the world!

Keri L.

5/5

As a parent of someone living with a chromosome 18 condition, I have found this organization to be a unique and refreshing resource. After the diagnosis I left alone and lost… and then I discovered the Registry. Over time I got more involved, and I now know the heart (and science)behind this non-profit. Lean in! And support $$!!!

Kristy H.

5/5

Life changing!! I don't know what I would do without CH18 Registry & Research Society!! It has truly helped paved a way for our family that is promising through lifelong friendships, education, research and community!!

donna P.

5/5

We truly admire the dedication of the Chromosome 18 Registry and Research Society! They help a very specific group of children, and their families, to engage with other families, share their stories, and support each other. They provide resources and a wealth of content to help educate the community and build awareness, while also hosting events to raise money for research. They are making a difference and an impact, and we love supporting their mission for that very reason! ~Donna & Randy H.

Sue B.

5/5

What a wonderful organization! I can't thank them enough for their tireless and selfless work researching chromosome 18 disorders, and connecting our families! We felt so alone when my oldest daughter was diagnosed with a chromosome 18 syndrome 20 years ago, but we quickly became a part of this organization, and developed such strong friendships with so many other families going through similar struggles. We are truly honored to be a part of this chromosome 18 "family"!!!

Jessica

5/5

Chromosome 18 Registry is amazing organization. This is a vital resource and loving community of families and staff, who are there to support you and help you.

Anaya P.

5/5

Interning with Chromosome 18 was such an amazing and valuable experience! The staff was more than kind and accepting towards all interns, volunteers, and donors, and I got to see firsthand how much they care for their Chromosome 18 families. It was an honor to be part of such as impactful organization and to support Chromosome 18's events.