One of the organisations which helped the BPA start was Climb – Children living with metabolic diseases.
Climb are holding a national conference in Sheffield , on Saturday 16th April (9.30am to 4.30pm ).
It includes several sessions of particular interest to people with porphyria.
Dr Mike Badminton is giving a talk on light sensitivity problems with porphyrias.
Dr Maureen Fox is giving a talk on Genetic services for metabolic diseases (like porphyria). Dr Fox is lead scientist for the UK Genetic testing network.
Prof. Stuart Tanner is giving a talk on “Getting the Orphan drug you need: focus on SID and AIP”.
They are organising a day trip for children, so parents can attend the conference.
Please register by contacting climb on 0870 7700 325, or email Lesley Greene at lesley@climb.org.uk , or write to Chris Owen-Roberts, Conference Registrar, Climb, Climb Building, 176 Nantwich Road, Crewe, CW2 6BG,
For more information on the conference, see: http://www.climb.org.uk/Conferences/Sheffield2005.htm