National Tuberous Sclerosis Association Inc

Rating: 4.91 stars   104 reviews

Issues: Health, Cancer

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.
2014 Top-Rated Nonprofit
Write a Review

More Info

EIN 95-3018799
(800) 225-6872
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

profile
Role: Professional with expertise in this field
Rating: 5 stars  

TS Alliance is the world leader in patient organisations for Tuberous Sclerosis around the world.
Not only do they support families all around the USA (as the other reviewers highlight), they also take a lead in driving the international research agenda forward through securing funding, co-ordinating scientific advisory groups and hosting key research conferences. This work benefits not only Tuberous Sclerosis, but also research into epilepsy, autism and even cancer.
On top of this, TS Alliance has been the key organisation strengthening TSC International, the worldwide organisation for tuberous sclerosis patient associations. This work strengthens and builds the capabilities of TSC organisations all over the globe, benefiting the 1 million people world wide affected by Tuberous Sclerosis.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful?