As the first 'European Cystic Fibrosis Awareness Day' kicked off today Green Euro MP, Jean Lambert gave her support to those suffering from the disease when she opened the EU premiere of the opera-musical 'Some Sunny Night' highlighting that we can 'make the impossible possible.'
Jean Lambert, who is a member of the Parliamentary Intergroup on disability rights joined with Cystic Fibrosis Europe, the organisation representing 30,000 patients in 30 European Countries, Unicef and the Norweigian Ambassador to call for equal access to appropriate care for all children and people living with the disease throughout Europe.
Opening the performance of 'Some Sunny Night', based on a true story of Cystic Fibrosis patient Ketil Moe, Jean said; "As the most frequent life threatening genetic disease in Europe, we would imagine and hope that all European Cystic Fibrosis patients received the most up to date and appropriate care possible. Many patients receiving care live to be 40 years or older, however children in countries where Cystic Fibrosis care is less developed, do not have access to this expensive and time consuming treatment and often die prematurely.
"It is vital that this situation now changes and everyone has an equal chance to a full life. I welcome the annual European Cystic Fibrosis Awareness Day and trust we will see a positive future for patients throught the EU."
For more information please contact:
Morwenna Holland, Media Officer
tel: 020 7407 6280 or 07813149812
Notes to editors:
Jean Lambert: In October 2005 Jean was named MEP 2005 for Justice and Human Rights. Jean was first elected Green Party Member of the European Parliament for London in the 1999 European elections. She was re-elected in 2004. She is one of nine MEPs representing London and one of two UK Green representatives in the European Parliament.
1st European Cystic Fibrosis Awareness Day: Cystic Fibrosis Europe today welcomed all interested Members of the European Parliament for a meeting with Cystic Fibrosis patients and their families along with representatives from Cystic Fibrosis Associations.
The highlight of the awareness day will be the EU Premiere if Thomas Stanghelle's
opera-musical "Some Sunny Night". Performed with professional soloists,
chorus and dancers coming from Belgium, Norway, Holland and China. This opera-musical
is based on a true story of Cystic Fibrosis patient Ketil Moe and his handicapped
Chinese friend, Mark Wang, who set up "Run for Life" for both handicapped
and healthy people.