USH Ambassador for Kuwait - Fawaz Al-Hasban

Bearded man wears a white headscarf (ghutra) with a black cord (egal), and a long, white dishdasha.

 

 

 

 

 

 

 

 

I am Fawaz Al-Hasban, father of 4 sons with Usher syndrome. My journey with them has been a profound turning point in both my personal and professional life. What began as shock gradually transformed into awareness, commitment, and more than three decades of dedicated work advocating for the rights of persons with disabilities, supporting their families, and promoting psychological, educational, and social empowerment.

My children were never an obstacle in my path; they were my greatest teachers. Through them, my vision and mission were shaped: disability is not a deficiency in a person, but a difference in life’s path. Early intervention, family support, and accurate knowledge can make a real and lasting difference in the lives of individuals, families, and communities.

As part of this ongoing journey, I currently serve as the Kuwait USH Ambassador for the Usher Syndrome Coalition, a global alliance dedicated to raising awareness of Usher syndrome, supporting individuals and families affected by it, and strengthening collaboration among specialists, families, researchers, and community organizations.

Usher syndrome is a rare genetic condition that affects hearing, vision, and balance. It is often underdiagnosed or diagnosed late, which can significantly increase psychological and family challenges. This highlights the critical importance of awareness, early diagnosis, and specialized psychological and family guidance.

I warmly welcome any individual or family who suspects the presence of Usher syndrome, is uncertain about a diagnosis, or is seeking:

  • Clear and reliable information
  • Support
  • Family connections and guidance
  • Direction to specialized services
  • Shared experience and informed advice

Reaching out is not merely a request for help—it is an act of awareness and courage, and the first step toward clarity, stability, and hope.

Together, we build understanding, and create hope.

You can contact me at: ambassador.kwt@usher-syndrome.org
 

Resources - Usher Syndrome

  • تُعد مؤسسة USH Trust أكبر قاعدة بيانات دولية للتواصل مع الأفراد المصابين بمتلازمة آشر. أنشأها ويديرها تحالف متلازمة آشر، وهي أداتنا الأقوى للتواصل مع الأفراد المصابين بمتلازمة آشر حول العالم وتزويدهم بالمعلومات. تتيح لنا مؤسسة USH Trust التعرّف على المجتمع وخدمته بشكل أفضل، والقيام بما نُتقنه: تحديد هوية المجتمع وبنائه ودعمه وربطه، سواءً داخل مجتمع آشر أو مع مجتمع البحث العلمي. نُقدم ذلك عبر البريد الإلكتروني، والهاتف، ومكالمات الفيديو، ووسائل التواصل الاجتماعي، والندوات الإلكترونية، والفعاليات الاجتماعية المحلية، ومؤتمر USH Connections، والعديد من الموارد المتاحة على موقعنا الإلكتروني. انضموا إلينا!
    The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • ندعو الأفراد المصابين بمتلازمة آشر، ممن لديهم شغف بالبحث، للانضمام إلى برنامج جمع بيانات متلازمة آشر (USH DCP)، المدعوم من RARE-X. ستُضاف المعلومات الصحية المُدخلة في هذه المنصة الآمنة إلى قاعدة بيانات عالمية للمعلومات غير المُحددة الهوية، والمتاحة للباحثين حول العالم. ومع نمو برنامج جمع بيانات متلازمة آشر، سيزداد وعي الباحثين بمتلازمة آشر، مما سيؤدي إلى تطوير تجارب سريرية وعلاجات لفقدان البصر والسمع ومشاكل التوازن المرتبطة بمتلازمة آشر.

    Individuals with Usher syndrome who are passionate about research are invited to join the Usher Syndrome Data Collection Program, or USH DCP, powered by RARE-X. Health information entered into this secure platform will become part of a global database of de-identified information available to researchers worldwide. As the DCP grows, more researchers will become aware of Usher syndrome, leading to the development of clinical trials and treatments for the vision loss, hearing loss, and balance issues associated with Usher syndrome. Data collection is a crucial step in treatment development. RARE-X invites researchers from around the world to identify trends and gather information that will lead to clinical trials.

  • مقال للدكتورة سهير عيد الحافظ عمر، سفيرة مستشفى جامعة كاليفورنيا في لوس أنجلوس في مصر، حول اليوم العالمي للتوعية بمتلازمة آشر. تُظهر الصورة فواز، سفير مستشفى جامعة كاليفورنيا في لوس أنجلوس في الخوير، مع اثنين من أبنائه المصابين بمتلازمة آشر.

  • سيأخذك هذا الكتاب في جولة حول كيفية التواصل مع الأشخاص الصم والبكم من خلال حاسة اللمس وإنشاء لغة معهم يمكن لكلا الطرفين التواصل بها مع بعضهما البعض بشكل فعال.

    This book will give you a tour on how to communicate with deafblind people through the sense of touch and to create a language with them that both can communicate with each other effectively.