What is REDY Ry?

REDY ry– is a registered association disability shared by three disability groups.

REDY ry was founded in October 1999  as a bond to people who have been diagnosed with Rapadilino, Erb’s palsy or congenital deficiencies or anomalies (dysmelia or dys melos, in Latin), and their family.

REDY ry is a member in both Invaliidiliitto and Potilasliitto. Joining REDY you will be given also Invalidiliitto’s benefits for their members, for example the IT-magazine.

The association has over 200 members and it provides peer support and organizes all kind of meetings and events.

The most important of all is the annual meeting every spring where the rules for the next season are decided but the meeting is also really important for all the members in the association.

Local meetings are also provided whenever possible.

Chairman for the season 2022-2023 is Johanna Mansner, Hanna Nieminen as the vice-chairman and Heta Sillanpää is the secretary.

REDY is also in contact with foreign associations aiming to stay updated in the issues concerning their groups.

For example cooperations with the British and Swedish patient associations is at the start and we have a very lively site in Facebook.

We encourage you to join us too.

We don’t give medical references neither do we give any statements for different treatments.

We do our best to make sure that the information given on these pages is correct if it’s not written by a doctor or some expert.

 

 

What is Rapadilino?

Rapadilino is a rare hereditary, syndrome causing malformations. There are specific exterior features, shorter body height, limb malformations and shortage. However, the syndrome does not affect the brain and, thus, intelligence and cognitive development are normal.

Syndrome features and developmental disorders (resulting in the name of the syndrome):

RA radial aplasia / hypoplasia
PA absent patella / high arched palate
DI diarrhea / dislocated joints
LI little size / limb malformations
NO long nose / normal intelligence

Rapadilino is a very rare syndrome. There are only about 20 people affected by it in Finland (in a population of approx. 5 million). On average, only 0.8 out of 100 000 live born children has this syndrome.

 

 

What is Erb’s Palsy?

Birth defect of the shoulder nervous plexus- Erb’s palsy is originated in birth and is lead to the disparity of the baby to be born –between the birth canal and the size of the baby.

In most cases it’s impossible to detect this in advance reliably. Erb’s palsy is detected annually in Finland with less than 200 newborn and its risk in a normal birth is 0,4%. In most cases the injury heals well but annually approximately twenty children are left with obvious limitation in life. This is why Erb’ s palsy can be counted as a very rare disability group. In these categories there are max. 2500 persons/ diagnosed group in Finland.

 

 

What is Dysmelia?

There are 60-80 children born annually in Finland with different state of dysmelia. Dysmelia is a common name for a set of congenital anomalies or deficiencies or amputations, characterized by missing or shortened extremities or parts of them, and sometimes spinal or internal organ anomalies. It is classified as a rare physical disability. In Finland this includes groups which hold max 500 (100: 1000 000 inhabitants) people who have a permanent handicap in everyday life.

There are several  known reasons for dysmelia abnormity but yet the cause remains often unknown. If dysmelia is recognized as inheritable the cause is most likely a fault in the genes, in other words mutation, or a construction fault in the chromosome.

Dysmelia can be a single abnormality in a limb or it can be a part of a larger physical developmental disorder syndrome.

 

 

Membership

REDY is a nationwide association. National meetings are held normally with the annual meeting in the spring and it also has local activities.

The association can be joined by a person over 16 years old and who belongs to one of  REDY’s   three disability groups.

If a child is under 16 years old we need also his/her’ s caretaker’s information.

You can also join as a support member.

MEMBERSHIP FEES:

Actual members: 26 €

Support members (individual person): 34 €

Support members (company): 85 €

The business is run by membership fees and contributions. Some companies have every now and then supported locally. REDY receives contributions among other places from the patient union. By carrying out family support activities we want to have an influence on the matter that people getting peer support should share their experiences with others in the same situation.