National Tuberous Sclerosis Association Inc

Rating: 4.91 stars   100 reviews

Issues:

Location: 801 Roeder Rd Ste 750 Silver Spring MD 20910 USA

Mission:

Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected.

 


Geographic areas served: Nationwide
Programs: 1. Family Services develops programs and services that provide individuals with tuberous sclerosis crisis counseling and direct access to the information, resources and specialists experienced in the diagnosis, treatment, and management of tuberous sclerosis.2. Research stimulates and supports genetic, clinical and basic research into the various manifestations of tuberous sclerosis to further the development of genetic testing, gene therapy and clinical therapies.3. Public Health Education heightens awareness of tuberous sclerosis throughout the general public to broaden the scope of support and understanding beyond the tuberous sclerosis individuals and their families.4. Professional Education expands programs targeting those specialists who treat patients with tuberous sclerosis, medical students, genetic counselors and educators to minimize the tragic consequences of ignorance and misinformation.5. Government Relations focuses on obtaining federal resources for tuberous sclerosis research, clinical care and information dissemination.
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More Info

EIN 95-3018799
(800) 225-6872
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Community Reviews

Rating: 5 stars  

Thank you, Tuberous Sclerosis Association for all the guidance and support...... for my precious grandson, who is afflicted with TSC2. I am hopeful for a brighter future for these children!

When was your last experience with this nonprofit?

2013

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1 previous review
Rating: 5 stars  

When my third grandson was born in July of 2011 with tumors in his heart, left eye and brain our family was not prepared for the diagnosis of Tuberous Sclerosis. Thanks to the TS Alliance we received excellent guidance and all our questions were answered. My sweet grandson was having trouble with the anti seizure drugs that were prescribed for him at birth. it seems that certain medications that prevent seizures in patients can do more harm than good for these children. TS Alliance was knowledgeable and guided us with the proper combination medications. Don't know where we would be without the help of TSC? Thank you National Tuberous Sclerosis Association for helping our children and their loved ones cope with this condition. Praying for a cure every day! Sincerely, Stephanie Langbein (grandmother to John Fitzmaurice)

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Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

1 person found this review helpful

Since our daughter was diagnosed with tsc at age 14 in 1993, the TS Alliance as provided our family with information and a caring support community. We are blessed to be able to give back to that community.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

The TS Alliance has been a terrific resource to those of us with friends and families impacted by this terrible disease. We are grateful to have an organization to help educate and support all of us who stand together, praying for a cure.

Was your donation impactful?

Unsure

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?