[Insert your address] [Insert name of your local MSP] MSP The Scottish Parliament Edinburgh EH99 1SP [Insert date] Dear [insert name of MSP], Rare Disease Day 2018 I am/we are writing to you as my/our MSP to tell you about Rare Disease Day, an international event that aims to raise awareness about rare diseases and their impact on to insert some information here about your interest in rare patients’ lives. [You might like disease e.g. do you represent a patient organisation, do you or a family member have a rare disease, are you a clinician dealing in rare diseases etc. Please try and limit your story to a paragraph or two as it can be followed up with more information should your MSP show an interest] Collectively, rare diseases are not rare. In the UK alone, 3.5 million people will be affected by a rare disease at some point in their life. In Scotland, more than 300,000 people will be affected. As my/our MSP, please show your support for patients and families affected by rare diseases by joining Rare Disease UK, the national campaign for people with rare diseases and all who support them, for the annual Scottish Parliament Rare Disease Day Reception. Sponsored by Bob Doris MSP the event is taking place in the Garden Lobby on Tuesday 20 February 2018, 6-8pm. The event will provide an opportunity to meet and network with patients and constituents affected by rare diseases, as well as clinicians, health professionals, patient organisation representatives, researchers and industry. Speakers at the reception will provide an update on progress of the implementation of the UK Strategy for Rare Diseases and other developments affecting rare disease patients and families. They include: Bob Doris MSP, Convener of the Cross Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions; Professor S. Faisal Ahmed, Samson Gemmell Chair of Child Health, Glasgow Office for Rare Conditions Dr Jayne Spink, Chair of Rare Disease UK. Please show your support by joining Rare Disease UK on Tuesday 20 February between to mark Rare Disease Day. I/we look forward to your response. Yours sincerely, [Insert name] [Insert role and organisation if appropriate] Please note: if you require any further information about the UK Strategy for Rare Diseases, the event, or if you are interested in joining the Cross Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, please contact Rare Disease UK on or 07944765654.
[Insert your address] [Insert name of your local MSP] MSP The Scottish Parliament Edinburgh EH99 1SP [Insert date] Dear [insert name of MSP], Rare Disease Day 2018 I am/we are writing to you as my/our MSP to tell you about Rare Disease Day, an international event that aims to raise awareness about rare diseases and their impact on patients’ lives. [You might like to insert some information here about your interest in rare disease e.g. do you represent a patient organisation, do you or a family member have a rare disease, are you a clinician dealing in rare diseases etc. Please try and limit your story to a paragraph or two as it can be followed up with more information should your MSP show an interest] Collectively, rare diseases are not rare. In the UK alone, 3.5 million people will be affected by a rare disease at some point in their life. In Scotland, more than 300,000 people will be affected. As my/our MSP, please show your support for patients and families affected by rare diseases by joining Rare Disease UK, the national campaign for people with rare diseases and all who support them, for the annual Scottish Parliament Rare Disease Day Reception. Sponsored by Bob Doris MSP the event is taking place in the Garden Lobby on Tuesday 20 February 2018, 6-8pm. The event will provide an opportunity to meet and network with patients and constituents affected by rare diseases, as well as clinicians, health professionals, patient organisation representatives, researchers and industry. Speakers at the reception will provide an update on progress of the implementation of the UK Strategy for Rare Diseases and other developments affecting rare disease patients and families. They include: Bob Doris MSP, Convener of the Cross Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions; Professor S. Faisal Ahmed, Samson Gemmell Chair of Child Health, Glasgow Office for Rare Conditions Dr Jayne Spink, Chair of Rare Disease UK. Please show your support by joining Rare Disease UK on Tuesday 20 February between to mark Rare Disease Day. I/we look forward to your response. Yours sincerely, [Insert name] [Insert role and organisation if appropriate] Please note: if you require any further information about the UK Strategy for Rare Diseases, the event, or if you are interested in joining the Cross Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, please contact Rare Disease UK on or 07944765654.