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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

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You are here: Home / Rare Disease Day / Rare Disease Day 2009 / Welsh Assembly

Rare Disease Day - Welsh Assembly

Rare Disease Day Logo

3rd March 2009

The reception in Wales took place on the 3rd of March in the National Assembly for Wales in Cardiff and was kindly hosted by Lorraine Barrett AM, who has been a staunch supporter of our work for several years.  Lorraine Barrett AM

Lorraine Barratt AM

 

The attendance was excellent with approximately 70 people present and representing several conditions including: Myotonic Dysprophy, Huntington’s Disease, Progressive Supranuclear Palsy, Prader-Willi Syndrome, Laurence-Moon-Biedl-Bardet Syndrome, British & Irish Porphyria Network and Stickler Syndrome.

Welsh Assembly Main View

The speakers were Dr Stephen Jolles, Immunologist from the University Hospital of Wales, Cardiff and Mr Kevin Harris, father of Rhys Harris, a little boy with NEMO. They both spoke on their professional and personal experiences, respectively on Primary Immunodeficiency Syndromes and their excellent talks were very well received by the audience.

Dr Stephen JollesKevin Harris and Lorraine Barrett AM

Dr Stephen Jolles

 

 

Kevin Harris and Lorraine Barrett AM

Twelve Assembly Members attended the event and to date twenty five Members have subscribed to the Statement of Opinion (Early Day Motion) in support of better services for Rares Diseases.

Buddug Williams, Mark Isherwood AM and William Graham AMJane Hutt AM and William Graham AM

Buddug Williams, Mark Isherwood AM and William Graham AM

 

Jane Hutt AM and William Graham AM

 

Our sincere thanks goes out to everyone who made the effort to attend the event and who supported the organisation and delivery of the day.Attendees

Alastair Kent, Chair of Rare Disease UK, Dr Stephen Jolles, Kevin Harris and Lorraine Barrett AMAlastair Kent, Chair of Rare Disease UK, Dr Stephen Jolles, Kevin Harris and Lorraine Barrett AM

 

 Furkhanda Haxton and Andrew Long from the Primary Immunodeficiency Association  Dr Rachel Butler and Alastair Kent, Chair of Rare Disease UK  Attendees  Buddug Williams and Don Read
 William Graham AM and Kevin Harris  Jacqueline Peacock, Huntington's Disease Association  Julie Tanner and Lorraine Barrett AM  Angela Burgess and Dr Rachel Butler from the Medical Genetics Laboratory
 Alastair Kent and Dr Stephen Jolles  Buddug Williams, Don Read and Rosina Price  Buddug Williams and Mark Isherwood AM  Buddug Williams and Mark Isherwood AM

 Dr Stephen Jolles  Dr Stephen Jolles  Alastair Kent, Chair of Rare Disease UK
   Mark Isherwood AM and William Graham AM  Alastair Kent, Chair of Rare Disease UK
 Alastair Kent, Dr Stephen Jolles and Kevin Harris

 Attendees

 Lorraine Barrett AM

 Attendees

 Mr and Mrs Evans, Julie Tanner and Jacqueline Peacock

 Alastair Kent, Chair of Rare Disease UK

Dr Stephen Jolles

 

See photos from our other events: