LAL D Study Opportunity with Honorarium (60 minutes over telephone)

[Brett B.]

Subject: LAL D Study Opportunity with Honorarium (60 minutes over telephone)
   

LAL Solace is partnering with Trinity Partners, a global life sciences consulting firm (www.trinitypartners.com), to provide an opportunity for LAL Solace community members to participate in a study for LAL D patients and their caregivers. The aim of this research is to better understand the LAL D patient experience, from symptom onset through to diagnosis, treatment, and on-going management, to elucidate the unmet needs for this disease and to improve treatment of LAL D. All information discussed will be kept confidential and no identifying information will be shared with other parties. The interview will be conducted via telephone and will last 60 minutes.  Compensation of $100 will be provided for your time.
 
Study Enrollment Criteria:

 

1. Patients or caregivers of patients (if patient is under the age of 18) who currently have or have had LAL D (Wolman Disease or Cholesteryl Ester Storage Disease)
2. Patients or caregivers from the US, UK, Italy, Spain, France, Germany, or Belgium

 

If you are interested in participating in this research, and meet the study enrollment criteria, please contact Victor Kang (mailto:[e-mail]) to schedule an interview time. Interviews will be conducted between October 1st and October 30th 2014. Thank you in advance for your consideration, and we are looking forward to hearing from you.

 

Warm regards,

[Brett B.]

This is a great opportunity to share your experience with LAL Deficiency (Cholesterol Ester Storage Disease and Wolman's Disease).  Any information shared will be kept confidential.  Your experience with LAL D will help all of us get a better understanding of the journey that you have went through.  The goal is to identify unmet needs and to improve treatment for those of us affected with LAL D.  Please consider participating.  If you have any questions about the study, feel free to contact me or Victor Kang at the email address provided above.  

Thank you,

Brett

[Jaki Jahnke]

Thank you Brett fir reaching out. I am still new to all of this and I am figuring out how to change my profile and add to it.

I am 26 years old and just diagnosed last week. It is very mentally and emotionally overwhelming.