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About Tuberous Sclerosis Complex  |  How to Start a TSC Organization  |  Find a TSC Organization in Your Area

         A Worldwide Association of
Tuberous Sclerosis Complex Organizations




How to Start a TSC Organization

1.  Connect with TSC International

Contact the TSC International working group to be added to our email lists and stay in touch. This can be an important way to ensure that your country is kept up to date with the latest developments in the care of TSC. Members of TSCi will also be available to help you in establishing your group, particularly in steps 2a and 2b.

2.  Connect with interested people in your area

A. Find TSC families

It will be very difficult to keep a small group running without help, so try to find other families living with TSC in your country that are also interested in forming a group. Together you can achieve much more.

Ideas on how to find other families:

  • Talk to your doctors, who may be treating other families with TSC.
  • Talk to other organisations, such as those for rare diseases, epilepsy, disability or autism in your country. They may be able to refer you to another family or publicise your details to their own membership.
  • Post in various groups that may have members from your country. Some suggestions include TS Alliance Facebook Group or Inspire Forums.
  • Create a webpage or Facebook page for your group that includes contact details.

B. Find clinicians and researchers

Most TSC patient organisations have medical advisors who support them. This is a two-way relationship that can strengthen your group and also improve the care these health professionals can offer to their TSC patients. You can start with the doctors and researchers you already know and build this group of interested professionals over time. TSC International member associations may also be able to help you with this, particularly the TS Alliance in the United States due to their contacts with researchers and clinicians around the world.

3. Find another group in your country to help or mentor you

There are many cultural and legal differences between countries that an established organisation in your country may be able to help you with. A larger organisation may also be able to support you in other ways such as offering meeting rooms and office facilities. Rare disease organisations or organisations for related conditions such as epilepsy and autism might be a good place to start.

4. Get together with other TSC families and define your goals and plans

Patient organisations commonly try to do a mix of the following:

  • Facilitate peer support between families that are living with TSC;
  • Provide up to date information to TSC affected families and health professionals about the disease;
  • Raise the awareness of the disease with the general public; and
  • Support research in their own countries.

You will need to decide what goals are most important in your country and start thinking about how you can achieve them.

5. Create a legal entity in your own country

Most patient organisation are registered in some way in their own country.  This allows them to do things such as fundraise and employ staff. The rules are different in each country and this is an area that an established organisation (see point 3) may be able to help you with.