Latest News

UPDATE April 06, 2020

A VERY IMPORTANT MESSAGE FOR OUR PATIENTS

Dear Patients and Family Members,

With the emergence of COVID-19 pandemic, our patients and their families are understandably unsettled about its implications for their health and well-being.

We suggest that the patients under our care follow the CDC recommendations given to the highest risk populations such as the elderly and those with other co-morbid conditions, which pose a greater risk of complications. Please check the CDC website for current updates.

cdc.gov/coronavirus/2019-ncov/about/index.html

cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

While it is suggested that COVID-19 may remain asymptomatic in pediatric population, we interpret this observation with extreme caution for the pediatric patients followed at our center, as the disorders we treat affect the immune system (either primary or secondary), and in addition, many of these disorders have lung involvement as well.

We recommend social distancing, but we also would like to emphasize the importance of continuation of your therapy uninterrupted. Please contact the center where you receive your infusion treatments and inquire whether certain policies that may limit personal contact and duration of the time spent (such as private rooms, and availability of checking in and preparation of the medication in advance) are in place. Please note that we DO NOT recommend interrupting or skipping any treatments especially for patients who have an active “Gaucher disease”. If you are skipping treatments for reasons that are not predictable, such as unavailable home nursing services, or delays in drug shipments, kindly contact us so that we can advise a plan to monitor your disease.

The oral medication (Cerdelga®) may interact with many medications, especially with Hydroxychloroquine used as the first line treatment in COVID-19 infections. Cerdelga, Hydoxychloroquine and Azithromycine combination should not be taken together for their potential interactions that may affect the heart rhythm and EKG. Please contact us immediately if you are unsure about your medications.

For the patients who receive their treatments at our center, we will implement a triage system prior to the appointment by confirming that you do not have any symptoms such as chills, sore throat and cough or a history of known exposure to COVID-19. At the day of the appointment in addition, we will check your temperature before you enter the premises at the check-in station. If you have a fever, even low grade (for adults 99 degrees F, and for children 100 F and above), we will not be able to administer your treatment, and will refer you to your health care provider for further diagnosis and management.

If you are uncertain of your disease status, please contact us so that we can offer you guidance. Let us know whether we could be of further help by utilization of remote health and Telemedicine services. You may contact us via email at info@ldrtc.org or by phone at +1 703-261-6220.

Respectfully,

Ozlem Goker-Alpan, M.D.

Lysosomal & Rare Disorders Research & Treatment Center (LDRTC) Fairfax, VA

UPDATE March 25, 2020

VERY IMPORTANT MESSAGE FOR OUR PATIENTS

March 25, 2020

In the face of the challenges posed by the current COVID-19 pandemic, LDRTC is continuing to serve the Rare Disease community by maintaining the medical services offered to our patients with Lysosomal Disorders, Immune deficiencies, and other rare diseases. We remain fully operational to administer infusions and injectable therapies at our Infusion Clinic. Clinical Trial protocols for many life-saving therapies are similarly moving forward without any interruption.

 

Our utmost concern is to protect the health and wellbeing of our patients, and maintain the safety of our staff, while continuing to deliver the level of service and reliability you count on from LDRTC.

 

Some of the measures we implemented during these extraordinary times include

  • A reduced day and a staggered clinic schedule to ensure that premises are thoroughly cleaned and disinfected.
  • Screening all patients both with a questionnaire and temperature checks prior to entering the treatment facility.
  • Not allowing patients or visitors to congregate at the waiting room.
  • To reduce the foot traffic, we kindly ask patients not to bring any company, and minors to be accompanied by one parent only, who are also screened. Very young infants may require both parents’ care.  
  • Providing private rooms and also private bathrooms if possible, during their visit.

 

In addition, we closely monitor our staff’s health and provide an extended break to monitor themselves prior to the start of clinic’s weekly schedule.

 

Please let us know whether we could be of further help by utilization of remote health and Telemedicine services. You may contact us via email at info@ldrtc.org or by phone at +1 703-261-6220.

 

Respectfully,

 

Ozlem Goker-Alpan, M.D.

Lysosomal & Rare Disorders Research & Treatment Center (LDRTC)

Fairfax, VA

UPDATE March 17, 2020

VERY IMPORTANT MESSAGE FOR OUR PATIENTS

March 17, 2020

Dear Patients and Family Members,

With the emergence of COVID-19 pandemic, our patients and their families are understandably unsettled about its implications for their health and well-being.

We suggest that the patients under our care follow the CDC recommendations given to the highest risk populations such as the elderly and those with other co-morbid conditions, which pose a greater risk of complications. Please check the CDC website for current updates.  

https://www.cdc.gov/coronavirus/2019-ncov/about

https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

While it is suggested that COVID-19 may remain asymptomatic in pediatric population, we interpret this observation with extreme caution for the pediatric patients followed at our center, as the disorders we treat affect the immune system (either primary or as secondary), and in addition, many of these disorders have pulmonary involvement as well.     

We recommend social distancing, but we also would like to emphasize the importance of continuation of your therapy uninterrupted. Please contact the center where you receive your infusion treatments and inquire whether certain policies that may limit personal contact and duration of the time spent (such as private rooms, and availability of checking in and preparation of the medication in advance) are in place. Please note that we DO NOT recommend interrupting or skipping any treatments. For the patients who receive their treatments at our center, we will implement a triage system prior to the appointment by confirming that you do not have any symptoms such as chills, sore throat and cough or a history of known exposure to COVID-19. At the day of the appointment in addition, we will check your temperature before you enter the premises at the check- in station. If you have a fever, even low grade (for adults 99 degrees F, and for children 100 F and above), we will not be able to administer your treatment, and will refer you to your health care provider for further diagnosis and management.

If you are uncertain of your disease or immune status, please contact us at info@ldrtc.org or 1+703-261-6220, so that we can offer you guidance.

Respectfully,

 

Ozlem Goker-Alpan, M.D.

Lysosomal & Rare Disorders Research & Treatment Center (LDRTC)

Fairfax, VA

Connect with us

3702 Pender Drive, Suite 170,
Fairfax VA 22030

  • dummy+1 703-261-6220

  • dummy+1 703 991-6592

  • dummy info@ldrtc.org

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