“Egmond Circle”

Inter­na­tional Gath­er­ing for People Affected by Contergan/Thalidomide

Vom 26. Okto­ber bis zum 2. Novem­ber 2026 findet in Egmond aan Zee das inter­na­tionale Begeg­nungs­fest „Egmond Circle“ statt. Erwartet werden rund 300 Gäste aus verschiede­nen Ländern. Vorträge und Prax­is­work­shops greifen Themen auf wie Gesund­heit und Älter­w­er­den, medi­zinis­che Bedarfe, Hilf­s­mit­tel, Assis­tenz, barri­ere­freies Wohnen und Mobil­ität. Beglei­t­end bietet die Woche zahlre­iche Gele­gen­heiten für Kunst, Kultur und inter­na­tionalen Austausch.

„Egmond Circle“ bringt Menschen mit Contergan-/Thalidomid­schädigung, ihre Ange­höri­gen sowie Wissen­schaftler*innen und Unterstützer*innen zusam­men. Eine Woche lang geht es um Fragen des Lebens mit Contergan-/Thalidomid­schädigung im Alter – im fach­lichen Austausch ebenso wie in persön­lichen Begegnungen.

Event:
Egmond Circle – Contergan/Thalidomide
Remem­ber. Under­stand. Think Ahead. 

Date:
From Octo­ber 26 to Novem­ber 2, 2026

Loca­tion:
Hotel Zuider­duin, Egmond aan Zee, Netherlands

Partic­i­pants:
About 300 guests from many countries

Topics:
Health and Aging, Medical Needs, Assis­tive Devices, Personal Assis­tance, Acces­si­ble Hous­ing, Mobil­ity, as well as Art, Culture, and Inter­na­tional Exchange

Languages and Acces­si­bil­ity:
The confer­ence language is German. Simul­ta­ne­ous inter­pre­ta­tion into English and Portuguese, as well as writ­ten and sign language inter­pre­ta­tion, will be provided. 

Orga­nizer:
Asso­ci­a­tion of Thalido­mide Victims North Rhine-Westphalia e.V. (Inter­essen­ver­band Conter­gangeschädi­ger Nordrhein-Westfalen e.V.) – Aid Orga­ni­za­tion for Those Affected by Prena­tal Damage

“Egmond Circle” combines expert infor­ma­tion, prac­ti­cal discus­sion, and personal inter­ac­tion. The focus is on topics that are partic­u­larly impor­tant for many people with thalidomide-related disabil­i­ties today: 

Health and Aging
How do phys­i­cal demands change as we age? What medical ques­tions arise? What kind of care is needed? 

Aids and every­day life
Which assis­tive devices make every­day life easier? What solu­tions have those affected come up with them­selves? What support is needed regard­ing bath­rooms, beds, mobil­ity or communication? 

Assis­tance and Care
How can support be orga­nized with­out losing one’s auton­omy? What expe­ri­ences have there been with personal assis­tance, supple­men­tal care, and inter­na­tional care systems? 

Acces­si­ble Living
What are the require­ments for apart­ments, bath­rooms, doors, path­ways, and fixtures? Which modi­fi­ca­tions become partic­u­larly impor­tant as we age? 

Mobil­ity and Vehi­cle Modi­fi­ca­tions
How can mobil­ity be main­tained? What tech­ni­cal solu­tions are avail­able? What expe­ri­ences do those affected have with vehi­cle modi­fi­ca­tions and acces­si­ble routes? 

Art, Culture, and Connec­tion
“Egmond Circle” is not just a profes­sional event, but also a cele­bra­tion of connec­tion. Art, culture, leisure, and shared expe­ri­ences create oppor­tu­ni­ties for conver­sa­tion, reunions, and new connections. 

Since child­hood, people with thalidomide-related disabil­i­ties have learned to compen­sate for their phys­i­cal limi­ta­tions through strength, move­ment patterns and assis­tive devices. However, what has enabled them to live inde­pen­dently for decades can often present new chal­lenges in old age. Constant overuse of certain body parts can lead to increased pain, signs of wear and tear, fatigue, and psycho­log­i­cal stress 

Issues Related to Aging

While the focus in the past was primar­ily on inte­gra­tion and partic­i­pa­tion, issues related to aging are now increas­ingly taking center stage for people with thalidomide-related disabil­i­ties. “Egmond Circle” provides a forum for ques­tions that concern people with thalidomide-related disabil­i­ties and their fami­lies today: What medical care is needed? Which assis­tive devices make daily life easier? How can assis­tance, mobil­ity, hous­ing, and care be orga­nized in a way that preserves self-determination? 

International Dimension

The inter­na­tional dimen­sion of the thalido­mide history is also a topic of discus­sion at the “Egmond Circle.” The living situ­a­tions of those affected still vary greatly today, depend­ing on recog­ni­tion proce­dures, health­care systems, medical infra­struc­ture, access to assis­tive devices and soci­etal percep­tions. Inter­na­tional exchange enables knowl­edge to be shared, expe­ri­ences to be high­lighted, and common concerns to be articulated. 

Exchange and Interaction

In addi­tion, “Egmond Circle” is also an inter­na­tional gath­er­ing where people can make new friends and recon­nect with old ones, featur­ing a support­ing program of art and culture as well as shared recre­ational activ­i­ties. Beyond shar­ing knowl­edge and offer­ing guid­ance, the event is about remem­brance and recog­ni­tion, strength­en­ing soli­dar­ity, offer­ing encour­age­ment, and – last but not least – cele­brat­ing the joy of life. 

To enable as many people as possi­ble to partic­i­pate, acces­si­bil­ity and linguis­tic acces­si­bil­ity are key require­ments for “Egmond Circle.”

Plans include, among other things:

  • The confer­ence language is German; simul­ta­ne­ous inter­pre­ta­tion will be provided into English and Portuguese.
  • Writ­ten Interpretation
  • Sign Language Interpretation
  • Support for special needs related to hous­ing, assis­tive devices, and
  • Care
  • Infor­ma­tion in multi­ple languages
  • Infor­ma­tion in Easy-to-Read Language

Special needs are also taken into account when it comes to lodg­ing, travel, and the stay.

For edito­r­ial teams, inter­view subjects can be arranged upon request, for exam­ple on the follow­ing topics:
  • Living with Thalidomide-Related Disabil­i­ties in Old Age
  • Health, Reha­bil­i­ta­tion, and Care
  • Assis­tance, Assis­tive Devices, and Inde­pen­dent Daily Living
  • Inter­na­tional Expe­ri­ences with Recog­ni­tion and Support
  • A Reminder of the Thalido­mide Scan­dal and Its Consequences
  • Goals and Signif­i­cance of “Egmond Circle”
  • Partic­i­pants’ Personal Perspectives

Please direct inter­view requests to the press contact.

Conter­gan was a sleep aid and seda­tive manu­fac­tured by Grünen­thal that contained the active ingre­di­ent thalido­mide. It was launched in the Federal Repub­lic of Germany in Octo­ber 1957 as an over-the-counter medica­tion and was taken as a “mira­cle pill” for condi­tions such as insom­nia, anxi­ety, and morn­ing sick­ness, among others. At the time, adver­tise­ments portrayed the drug as partic­u­larly well-tolerated and safe. 

Global Distribution of Thalidomide

Medica­tions contain­ing thalido­mide were marketed inter­na­tion­ally under vari­ous brand names, includ­ing “Softenon,” “Distaval,” and “Kevadon.” In the U.S., however, Kevadon was not offi­cially approved. In addi­tion, some coun­tries had thalidomide-containing prepa­ra­tions that were not marketed by Grünen­thal or its licens­ing and distri­b­u­tion part­ners. In Brazil, thalido­mide was later used in partic­u­lar to treat the after­ef­fects of leprosy. 

Consequences of Use During Pregnancy

If women took thalido­mide during preg­nancy, the active ingre­di­ent could cause severe birth defects in the unborn child. Depend­ing on when during preg­nancy the drug was taken, the arms and legs were often severely short­ened. Damage could also affect the ears, eyes, inter­nal organs and other parts of the body. 

On Novem­ber 27, 1961, Grünen­thal with­drew Conter­gan from the market in Germany. World­wide, the number of people with thalidomide-related disabil­i­ties is esti­mated at about 10,000; in Germany, the figure is around 5,000. More than 2,000 people affected by the drug live in Germany today. 

Impact on Politics and Society

The Conter­gan scan­dal had far-reaching conse­quences for phar­ma­ceu­ti­cal law. Follow­ing the disas­ter, the require­ments for the test­ing, approval, and safety of medica­tions were signif­i­cantly tight­ened. At the same time, the scan­dal contin­ues to shape the debate to this day regard­ing respon­si­bil­ity, compen­sa­tion, care, and self-determination for people with thalidomide-related disabilities. 

Mile­stones from Market Launch to the Current Supply Situation

1954
Wilhelm Kunz and Hein­rich Mück­ter develop “Conter­gan” (known as “K17”) in the research depart­ment of Grünen­thal in Stol­berg. In April 1954, thalido­mide is filed for a patent with the German Patent Office. 

1956
On June 11, Grünen­thal submits an appli­ca­tion for market autho­riza­tion to the North Rhine-Westphalia Ministry of the Inte­rior, which is approved one month later. Start­ing in Novem­ber, Grippex, a medica­tion contain­ing thalido­mide, is sold in the Hamburg area. The first child with thalidomide-related birth defects was born in Decem­ber. An employee took a sample home and gave it to his wife. 

1957
Conter­gan, contain­ing the active ingre­di­ent thalido­mide, is intro­duced to the market in the Federal Repub­lic of Germany. The sleep aid and seda­tive is avail­able over the counter and is also recom­mended for preg­nant women to treat morn­ing sick­ness. In the years that followed, thalido­mide was marketed in numer­ous coun­tries, includ­ing the United King­dom, Australia, Canada, Japan, Austria, and Switzerland. 

1958
Thalido­mide is approved and marketed in the United King­dom under the name “Distaval” and in Austria – where it is avail­able only by prescrip­tion – under the name “Softenon,” among other coun­tries. In the years that follow, medica­tions contain­ing thalido­mide are marketed in a total of 48 countries. 

1959
In Janu­ary, the first child with birth defects caused by thalido­mide is born in Great Britain. A gyne­col­o­gist informs Grünen­thal of his suspi­cion that his son’s birth defects are linked to thalido­mide. Start­ing in Octo­ber, reports of nerve damage follow­ing prolonged use of Contergan/Thalidomide began to increase. By the end of Novem­ber 1961, approx­i­mately 1,500 doctors and phar­ma­cists, as well as more than 300 consumers, had reported a total of more than 3,000 cases to Grünenthal. 

1960
Distillers, Grünenthal’s licensee in the United King­dom, adds a warn­ing about nerve damage caused by thalido­mide to the Distaval pack­age insert in August 1960. In Octo­ber, the KBV alerts the Drug Commis­sion about nerve disor­ders caused by thalido­mide. In Novem­ber, Grünen­thal updates the pack­age insert but asserts that the “hyper­sen­si­tiv­ity reac­tions” are reversible. In the U.S., Frances Oldham Kelsey denies approval; the FDA requests addi­tional safety data. 

1961
Warn­ings about nerve damage and possi­ble birth defects are on the rise. Thalido­mide is made avail­able only by prescrip­tion in North Rhine-Westphalia, Hesse, and Baden-Württemberg. However, Bavaria, Berlin, and Lower Saxony failed to ensure that Conter­gan was only avail­able by prescrip­tion before sales were discon­tin­ued. On Novem­ber 27, Grünen­thal announces that it will with­draw Conter­gan and other thalidomide-containing prod­ucts from the market. 

1962
The full extent of the disas­ter becomes appar­ent: World­wide, approx­i­mately 10,000 chil­dren are born with severe birth defects; in Germany, about 5,000 are affected. Many of the chil­dren die at a young age. 

1964
The “Aktion Sorgenkind” lottery (later “Aktion Mensch”) is founded. Exten­sive media cover­age breaks the taboo surround­ing disabil­ity and leads to a shift in perspec­tive: disabil­ity is no longer viewed solely as a personal fate, but increas­ingly as a soci­etal responsibility. 

1968
The so-called Conter­gan trial against exec­u­tives of the Grünen­thal company begins at the Aachen Regional Court. The first out-of-court settle­ments and compen­sa­tion payments for affected indi­vid­u­als abroad (e.g., in the United King­dom through the distri­b­u­tion part­ner Distillers) are reached. 

1970
Grünen­thal reaches a settle­ment with the parents of the affected chil­dren and agrees to pay 100 million marks. The crim­i­nal proceed­ings are dismissed with­out a verdict. 

1972
The orga­ni­za­tion now known as the Conter­gan Foun­da­tion is founded under the name “Char­ity for Disabled Children.”

1973
The “Thalido­mide Children’s Trust” (simi­lar to the Conter­gan Foun­da­tion) is estab­lished in the United Kingdom.

1978
Follow­ing the thalido­mide disas­ter, a new phar­ma­ceu­ti­cal law goes into effect. The require­ments for the safety, qual­ity, and effi­cacy of medica­tions are signif­i­cantly tightened. 

2005
The foun­da­tion is renamed the “Conter­gan Foun­da­tion for People with Disabilities.”

2010–2012
The so-called Heidel­berg Study exam­ines the prob­lems, special needs, and gaps in care faced by people living in Germany with thalidomide-related disabilities.

2013
The Thalido­mide Foun­da­tion Act is amended. Pensions are signif­i­cantly increased, and provi­sions to cover special needs are introduced. 

2014
The estab­lish­ment of inter­dis­ci­pli­nary medical centers of excel­lence is prompted by an expert report from North Rhine-Westphalia on health damage, psychoso­cial impair­ments, and care needs.

2016
The state of North Rhine-Westphalia publishes a research report on its own role in the Contergan-scandal. Barbara Stef­fens, who was health minis­ter at the time, apol­o­gizes to those affected for the author­i­ties’ failure. 

2021
On the 60th anniver­sary of the drug’s with­drawal from the market, atten­tion is once again focused on the care situ­a­tion for people with thalidomide-related disabil­i­ties. Efforts to estab­lish inter­dis­ci­pli­nary medical centers of excel­lence are continuing. 

2023
The so-called Vascu­lar Study – funded by the Conter­gan Foun­da­tion – is the first study to exam­ine vascu­lar and organ patterns in people with thalidomide-related disabil­i­ties at the Univer­sity Hospi­tals of Cologne and Ulm.

Today
Inter­na­tional support for those affected remains inad­e­quate; while the Conter­gan Foun­da­tion was estab­lished in Germany, many victims in other coun­tries are still fight­ing for compa­ra­ble compen­sa­tion. Thalido­mide is still used medically today, includ­ing for the treat­ment of certain cancers and, in some coun­tries, for leprosy. In Brazil, gaps in the health­care system continue to lead to birth defects in newborns. 

Asso­ci­a­tion of Thalido­mide Victims North Rhine-Westphalia e.V. (Inter­essen­ver­band Conter­gangeschädi­ger Nordrhein-Westfalen e.V.) was founded in Cologne in 1967 by parents of affected chil­dren. It was guided by the prin­ci­ple of self-help: based on the belief that chal­lenges are better over­come together. The found­ing board consisted of Herbert Linn, along with Helene Brosius, Wilhelm Budde, Hans-Günter Münch, and Helmut Rinner. 

Today, the focus is on the long-term effects and the psychoso­cial burdens faced by those affected. Of the approx­i­mately 2,400 people in Germany with thalidomide-related disabil­i­ties, about 800 live in North Rhine-Westphalia. 

Main Respon­si­bil­i­ties of the Association

  • Knowl­edge Shar­ing: The advo­cacy group provides infor­ma­tion on medical, social, and legal issues to people with thalidomide-related disabil­i­ties, their fami­lies, and doctors and ther­a­pists. To this end, it collects rele­vant infor­ma­tion and presents it in an easy-to-understand, prac­ti­cal way. 
  • Every­day and Life Support: The asso­ci­a­tion supports its members with ques­tions and chal­lenges related to daily life – such as acces­si­ble hous­ing, orga­niz­ing personal assis­tance, or coping with the health conse­quences of thalidomide-related disabilities.
  • Peer Coun­sel­ing: Coun­sel­ing provided by those affected for those affected is partic­u­larly impor­tant. Through direct inter­ac­tion, expe­ri­enced members help with issues such as pensions and long-term care, or with find­ing suit­able doctors and ther­a­peu­tic services. 
  • Commu­nity and Inter­ac­tion: Group meet­ings, outings, and events create oppor­tu­ni­ties for people to come together and inter­act person­ally. In this way, the asso­ci­a­tion fosters social inter­ac­tion and strength­ens cohe­sion within the community. 

The asso­ci­a­tion comprises ten local chap­ters. It is a member of the Federal Asso­ci­a­tion of Conter­gan Victims (Bundesver­band Contergan­geschädigter e.V.).

Board of Directors

Udo Hert­erich (Chair, Contact Person for Polit­i­cal Affairs)
Phone: 0152 – 34 34 25 04
Email: herterich@contergan-nrw.eu

Bianca Vogel-Schmidt (Vice Chair, Public Rela­tions Contact)
Phone: 02642 – 90 55 37
Email: vogel@contergan-nrw.eu

Bärbel Drohmann (Board Member, Public Rela­tions Contact)
Email: drohmann@contergan-nrw.eu

Achim Rüsing (Asset Manager, Contact Person for Account Manage­ment and Cashier)
Phone: 02327 – 78 87 60
Email: ruesing@contergan-nrw.eu

Press Contact

Udo Hert­erich

Chair­man of the Asso­ci­a­tion of Thalido­mide Victims North Rhine-Westphalia e.V. (Inter­essen­ver­band Conter­gangeschädi­ger Nordrhein-Westfalen e.V.)

Phone: 0152 – 34 34 25 04
Email: herterich@contergan-nrw.eu