Rare Disease Day
Rare Disease Day takes place on the last day of February each year. It is held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families
The goal is to raise awareness amongst the general public, and also to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
You can find out more about Rare Disease Day here: https://www.rarediseaseday.org.
Rare Disease Day 2021: 28th February
A new report ('Time to Focus' published by Fight for Sight) has been released which is particularly relevant to genetic retinal diseases such as Stargardt's Disease. You can access the report here: https://www.fightforsight.org.uk/our-research/timetofocus/
As part of our own efforts to support Rare Disease Day this year on 28th February 2021 we are encouraging our community to send a letter to their MP highlighting the report.
We have created a template as a Word document which you can download via the button below, make the necessary changes, and then send to your MP. Or if you wish you can simply copy the text into an email and then add the relevant details such as your address to ensure that you receive a reply. You can find the details of your MP here: https://members.parliament.uk/FindYourMP.
We would be so grateful if you can join us in this campaign. Thank you!
Zoom meeting (28th February from 12pm to 2pm)
We are also excited to invite you to our Stargardt's Connected special World Rare Disease Day Zoom meeting on Sunday 28th February 2021 (12pm to 2pm GMT). You can see our event page here: https://www.rarediseaseday.org/event/united-kingdom/1058
At this meeting, we will be launching our new letter-writing campaign calling on MPs to advocate for increased support for research into Stargardt's Disease.
We will also be introducing the UK's new rare disease strategy and will be joined by a special guest from the UK's largest sight loss research charity - Fight for Sight - who will be speaking about their Time to Focus report which calls for more research into sight loss conditions to help address the personal and financial impact on people like us!
We will also have time to spend together in small groups in breakout rooms offering a chance to chat, to get to know each other, and share hints and tips.
Register your place now:
https://us02web.zoom.us/meeting/register/tZElfuqvrz4iEtImXpJIRfFi1w4KaBAmJdWA