Welcome to the Finnish
syndrome families web site!
The Finnish Sotos syndrome families support group was
started in 1997 and we provide
peer support to families
Sotos syndrome (including 5q35.2 deletions, sotos
like and undiagnosed overgrowth conditions). We
are a small independent and self financed group.
Due to the long distances we stay in touch thru our
e-mail list and chat.
In June 2007 there was a
financially supported spa holiday for Sotos families.
We had a representative at Eurordis meetings for the
root" place in internet for rare disease persons
and support groups in Finnish was opened:
We have no national rare disease
See other national alliances:
In August 2008 we had a weekend
meeting for the families. Our favorite activities were
sauna, swimming and BBQ by the fire on a
lake shore. The traditional volley ball match was
played despite the rainy weather.
Our chair person Mika Vilppolahti
performed his stand up comedy act for us to celebrate
his election. This year the young adults took a
prominent role in organizing the groups future
We Sotos families decided to
support the initiative "by the people" for a Finnish
national rare disease alliance. We hope to influence
it's creation and collaborate with other
This year we are happy to have met new families,
grandparents, and proud to hear about new drivers
We now have a volunteer sports event planner. Many of
Sotos children and adults have benefited from horse
riding therapy and have continued to ride as a hobby if
it was possible. There is now also a precedent in
placing an adult Sotos rider in the special needs riders
Only a minority of Sotos persons have gotten married,
had kids, have a drivers license. Equally, only a
minority is eligible for the services for the
intellectually disabled. Most are somewhere in between.
The challenge for the future is finding solutions that
would lead to smooth transition to employment and
- put 'em on a horse
Plans for summer 2009 include a financially supported
spa holiday for the families.
We are looking forward to a horse
riding camp in
If you wish to contact us, please e-mail or call the
contacts on the contacts page. We will forward your
message (but no attachments) to our members.
We have a closed
e-mail group in Finnish.
In english please e-mail: