Vasculitis UK

Access to drugs for Ultra-Rare Diseases Debate

Message from Genetic Alliance UK

On Tuesday 16 June 2.30pm – 4pm there will be a debate taking place in Westminster Hall on “Access to drugs for ultra-rare diseases” tabled by Greg Mulholland MP​.

In conjunction with the House of Commons ​we will be hosting a Twitter chat on​ Monday 15 June 2pm -​ 4pm. This is to help raise awareness of the debate and to help inform MPs about the real life situations and experiences of rare disease patients. We hope that this will give us an opportunity to highlight some questions for MPs to consider and possibly use within the debate.

The House of Commons staff are trying to get MPs involved in the Twitter chat, so it would be great to have as many different patient voices involved as possible.

During the Twitter chat we will be asking patients to share their experiences of accessing ultra rare disease medicines (orphan drugs)​. We will be retweeting throughout the Twitter chat. We want members to share examples of both good and bad experiences in gaining access to rare disease medication. For example, has a rare disease medicine improved your quality of life, were you able to access the drug easily through the NHS?

How you can get involved

•Follow the Twitter chat, and get involved using the hashtag #RDdebate

•If you are not already following us on twitter our handle is @GeneticAll_UK

•Ask your MP to get involved in the twitter chat and debate. You can find out who your local MP is here. If you want to find their twitter handle we can help, just email us.

•Share this with your membership groups and ask as many people as possible to get involved

For those of you who want to watch the debate, it will be broadcast live on Parliament TV.

If you have any questions, please contact Genetic Alliance UK Rare Disease UK

1 Reply

Hopefully this will highlight the plight. It took 6 appeals to NHS Funding Board for my "life saving" treatment because my condition was so rare.


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