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Program 29. February 2020
© Tom Neitzke

A Search for Solutions: New Paths for Early Diagnosis

When: 29 Feb. 2020
Venue: eWerk in Berlin
Language: English / German (translation provided)
Moderator: Raiko Thal


Entry: Free


CENTOGENE’s Rare Disease Day 2020 is a global initiative with events in Lahore, Berlin, and Mexico City for awareness raising amongst decision makers, researchers, health professionals, and the general public – signaling our global responsibility and dedication to patients, patient organizations, and local physicians around the world.

9:00 - 09:05



9:05 - 9:20

Welcome Address


9:20 - 9:40

Rare Diseases - A Lesson for All of Us

GERALDINE UHLIG, Patient Advocate, Berlin, Germany

9:40 - 10:00

Greetings from Rare Disease Day - Lahore & Event Summary

10:00 - 11:00

Patients and Families: Perspective and Contributions to Solutions

OLIVER HÜLSKEN, German Syngap Family Support / Syngap Elternhilfe: "The Search for Answers", Krefeld, Germany
TAYLOR KANE, Founder of Remember The Girls: "The Importance of Screening Carriers of X-linked Disorders", New Jersey, USA
DR. FRANK STEHR, CEO NCL-Foundation: "For a Future without Childhood Dementia", Hamburg, Germany

11:00 - 11:20 

Coffee Break

11:20 - 12:40

Rare Disease Challenges and Paths to Early Diagnosis

DR. UMA RAMASWAMI, Lysosomal Disorders Unit, Institute of Immunity and Transplantation, London, UK
DR. LILIAN MONTEIRO-PALMA, Department of Internal Medicine, Campinas State University, Campinas, Brazil

12:40 - 13:00

Biotechnology and Rare Diseases - New Opportunities and Old Challenges

DR. ALEXANDER SCHUTH, Co-Founder and COO Denali Therapeutics, South San Francisco, USA

13:00 - 14:00


14:00 - 14:05

Cultural Program: Opening


14:05 - 14:35

Percussion Performance

CHRISTOPH SIETZEN - Outstanding percussion talent Christoph Sietzen was awarded the ICMA (International Classical Music Awards) Young Artist Award, and the European Concert Hall Organisation (ECHO) named him a ‘Rising Star’ for the 2017/18 season.

Christoph Sietzen will be playing:
Iannis Xenakis: Rebonds A et B pour Multipercussion
Andrew Thomas: Merlin for solo Marimba

14:35 - 14:50

Excerpt by filmmaker David Sieveking - Accompanying interview with Geraldine Uhlig & David Sieveking

14:50 - 15:05

Featured Film from CENTOGENE

Working with the Children’s Hospital in Lahore: Movie by Tom Neitzke, CENTOGENE, with live Percussion solo from Christoph Sietzen

15:05 - 15:10

International Rare Disease Film Festival – Berlin 2021: Announcement

15:10 - 16:00 

DISORDER Film Festival San Francisco Films

  • My Dad is Orange proudly presented by filmmaker Elle Ralph
  • Tess Is Not Alone by Bo Bigelow
  • Menkes Disease: Finding Help and Hope by Daniel DeFabio
  • Unconditional by Jon Dorflinger
  • Finn by Jon Muedder

16:00 - 16:15

Greetings from Rare Disease Day - Mexico City

16:15 - 17:00

Musical Performance

WAVE QUARTET – The amazing Marimba ensemble performs a broad repertoire that ranges from Bach to contemporary music. Having been praised for their performances in venues around the world, the Wave Quartet is known for bringing music to life through their exquisite and refreshing musical talents.

The Wave Quartet will be playing:
The Wave Quartet: Carmen-Suite (new arrangement of Georges Bizet's Carmen)
Suzanne Vega (arr. Wave Quartet): Gipsy
Avner Dorman: Udacrep Akubrad

17:00 - 18:00

Wine and Canapés

18:00 - 19:10

Evening Jazz Concert

SHAKE STEW - Led by the young Austrian bass star Lukas Kranzelbinder, Shake Stew is one of the most exciting European jazz formations.

Entertainment by comedian MARTHA LABIL during the afternoon.

The program is subject to changes.