Today is Rare Disease Day!

Lupus is a rare disease in Europe, although for those living with it, it doesn’t feel rare at all!

There are estimated to be less than five in 10,000 people in Europe who are living with lupus. Having a rare disease means that most people around you don’t have any idea what you are going through.

 

(Positive aspect of COVID and LOCKDOWN?)

 

Up until a year ago, living with lupus meant for some, living in fear and isolation. Some lupus patients take medication that suppresses their immune system to treat their lupus, but this can make people susceptible to infections. Lupus patients often live with the threat of another bug, another flare, another complication and never know what tomorrow might bring.  But today, there’s a new feeling almost of relief. People with lupus do not feel alone anymore!

 

Living in lockdown, with the threat of COVID-19 just outside the door, has brought up feelings of isolation and of being afraid of an invisible enemy for everyone. And while that is horrible and we wish it would stop as soon as possible for people everywhere, it is what some people with lupus may experience all the time. So today when we go out, masked, gloved, with our bottle of sanitising gel, no-one looks at us weirdly. When we avoid parties, or crowds, … for the first time ever we don’t have to explain or justify our behaviour.

 

Surprisingly, there have been positive aspects of this pandemic: the generalisation of remote working, telemedicine becoming a reality, remote ordering of medicines, more awareness of the effects of chronic diseases because of the awareness around “long covid” effects!  Perhaps you have some other examples?  Let’s make sure we are very clear about how much we appreciate those developments.  As lockdowns end and we push COVID to the back of our minds, let’s not forget the lessons we all learned during this time. Let’s all use this experience as a starting point for an ongoing conversation with your friends, your families, your healthcare workers, with society at large.  Let’s all discuss how to keep those improvements, while working together to end the isolation people with rare diseases often feel.

 

(LUPUS AND COVID VACCINES)

One step to getting out of lockdown is the COVID19 vaccination.  SLEuro (The European Lupus Society is a community of clinicians and researchers interested in SLE and related syndromes) has released a very useful Q&A document on the Covid vaccine for patients with SLE.  You can find it here: https://sleuro.org/sars-cov-2/

 

A lot of lupus patients around Europe have been vaccinated already, but many have not yet been offered a vaccine.  Each country has its own vaccination priority lists. Lupus gives automatic priority in some EU countries, not in others. What is the situation in your country? What are things like for you? Have you been vaccinated? Let us know by commenting under this post on our Facebook page and on Twitter!

 

(LUPUS RARE DISEASE)

Today is Rare Disease day. We should all be aware of two significant actors that help the rare disease community raise their voices in Europe: Orphanet and Eurordis

Orphanet is the portal for rare diseases and orphan drugs, a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. https://www.orpha.net/

 

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 956 rare disease patient organisations in 73 countries. https://www.eurordis.org/

Have a quick look on their websites and see what they are fighting for and doing for you!

 

(RARE 2030 RECOMMENDATIONS)

This week, the recommendations from the Rare2030 foresight study were released:

 

http://download2.eurordis.org/rare2030/Rare2030_recommendations.pdf

 

Rare 2030 is a proposal of EU policy recommendations that will bring improved policy and a better future for people living with a rare disease in Europe. This two-year project  was presented to EU Parliament last week with recommendations on the most critical areas needing better policy.

Here you can find information about Rare 2030: https://www.rare2030.eu

 

Please have a look at it and share it widely in your groups and countries. We will need to encourage our EU ministers to support it, so it’s good to learn as much as possible about it.

 

Use Rare Disease Day to start that conversation around you.

 

As they say: “Rare diseases are rare, but rare disease patients are numerous”.[/vc_column_text][/vc_column][/vc_row]

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
11 hours ago
LUPUS EUROPE

... See MoreSee Less

Comment on Facebook

Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

View more comments

12 hours ago
LUPUS EUROPE

Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

1 hour to go! 😃

www.facebook.com/LupusEurope
... See MoreSee Less

Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
20 hours ago
LUPUS EUROPE

🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.
... See MoreSee Less

🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.

Comment on Facebook

Not succeeding to send an email for registration. I would like to participate. Thanks

Bonjour, en quelle langue sera la webinaire s'il vous plaît

Joy and happiness is all i see around ever since i came in contact with this great man. i complained bitterly to him about me having herpes only for him to tell me it’s a minor stuff. He told me he has cured thousands of people but i did not believe until he sent me the herbal medicine and i took it as instructed by this great man, only to go to the hospital after two weeks for another test and i was confirmed negative. For the first time in four years i was getting that result. i want to use this medium to thank this great man. His name is Dr aziegbe, i came in contact with his email through a friend in UK and ever since then my live has been full with laughter and great peace of mind. i urge you all with herpes or HSV to contact him if you willing to give him a chance. you can contact him through this email DRAZIEGBE1SPELLHOME@GMAIL .COM He also cured my friend with HIV and ever since then i strongly believe he can do all things. Don't be deceived thinking he does not work, i believe if you can get in contact with this man all your troubles will be over. i have done my part in spreading the good news. Contact him through his email and you will be the next to testify of his great work. web.facebook.com/Herpes-std-cure-dr-aziegbe-herbal-cure-103360314788997/

1 day ago
LUPUS EUROPE

One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

lupus100.org/
... See MoreSee Less

Comment on Facebook

Grazie

💜💜💜

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send