Get Involved

Speak Up

Shouting on social media is the easiest way you can help the cause. If you don't have much time, if you are unwell and unable to leave the house very often. Simply tweet @SimonHarrisTD, post on Instagram and tag @SimonHarrisTD, tag your local counsellors, TD's, press... all while using the tag #EDS4IRE.

 

Search the # and RT others. 
Keep sharing the petition link on Facebook, Twitter, Instagram, whatever platform you use. If you use it on Facebook, make sure your post is set to public so that others can find it and share.

Consider writing emails too. Hold politicians accountable, ask them to take a stand with you. For a full list of TD's click here. If you need an example of what to write, check out the TD letter and press release section.

If you or your child have EDS or HSD, go to your local press and ask them to do a story about your cases and the current situation in Ireland. Any and all press coverage on individuals helps us all as a community. Let us know if you get published online so we can share.

And don't forget to follow us on Facebook and Instagram

Collect Signatures

So you signed the petition? (if not then click here to sign). Great! Shared it on social media and asked your friends to do the same? Super! Now how about gathering signatures in real life. After all, not everyone is online. Maybe you would like to keep a sign-sheet in the office for your colleagues to see? Maybe you work in a bar or a shop and your manager will allow you to have one there for signatures? Perhaps your GP would consider taking one to help out?

Or perhaps you're feeling brave enough to get out there on the street and ask passersby for the signatures? Get friends involved, let your local media know this is something you are doing. Make it fun and make it loud. Send us your photos if you do!

If you require some sign-sheets, you can print them from here. Or if  you would like us to post out sheets please use the contact form stating how many you require, as well as your address to post them to. We advise that they are printed on light card for durability.

Attend Our Protests

We have regular protest gatherings outside Dáil Éireann on Kildare Street in Dublin. These gatherings are important to get our message out and to put pressure on the governent to provide healthcare for EDS and HSD patients. Friends and family are very welcome to these events as we need as many people to stand with us a possible. We have a banner, leaflets and a physical copy of the petition for passersby to sign at each gathering. See Facebook events to keep up-to-date and join on mailing list (bottom of the page).

 

Become a Supporter

Supporters are groups who share our petition and the #EDS4IRE regularly. If you run a patient/ support group online, write a blog or own​ a business that uses social media and would like to get involved, all you have to do is share, share, share. Our regular 
supporters are featured in the footer of our website. 

To be in included in this section, such groups should be sharing the campaign and hashtag regularly.

 

If you would  like me to  assess your social media to be included, contact us with the all the relevant details. 
 

Hold an Info Day

Another way to get active and spread awareness is by holding an information table at your university/ college, work place, local club or shopping centre.  Simply get some of our leaflets printed available to download on the download page, maybe purchase a T-Shirt or sweater​ (or bring the logo to your local printer, also available on in the download section). 

Make sure to get permission of course, plan ahead and let us know (we'll help you as much as possible and put a call out on social media to get some volunteers).

If you want to hand out leaflets and get petition signatures on the street (a public place, not a private place like a shopping centre) then you do not require permission or a permit to do so.
 

Write a Blog Post
Tell Us your Story

If you or your child/ children have a hypermobility condition, even if you are still waiting for diagnosis, then we would love to hear from you for our stories section. Showcasing real patients who have struggled through the Irish healthcare system, is vital for the campaign. Have a look and read others stories, and don't forget to share to spread awareness. 

 

It can be short or long, no word count. If writing isn't your thing, how about a video? Message us to discuss.
 

Sign Our TD Letter

This letter is currently closed.

 

We will be penning another one soon. Make sure to join our mailing list (at bottom of the page) to keep up to date. You can see our old TD letters and press releases here
 

Take Our Poll

In order to show that there is a need for fully qualified consultants, or indeed a hypermobility clinic, we need to present proof that there is enough hypermobile patients living in Ireland -Patients who are suffering from lack of health care. For this we are collecting data, as there is currently no official registry. These details include age and diagnosis, and do not include private information such as name, email, phone number -It is completely anonymous. 

 

If you have a diagnosis of EDS, HSD, or one of the outdated terms (HMS, benign hypermobility, etc.), then please fill in our poll. If you are filling it in for you and a child/ children, then fill in separately for each person. Poll results are updated regularly at the bottom of the page. These figures will be used in the future for press releases, posters and flyers. Stand up and be counted.
 

Are you a blogger, or perhaps a potential blogger?

 

Another way in which we can raise awareness is through writing articles, so I've added a blog section to the website and want to hear from you. 


Do you fancy writing an article? Here are some title suggestions to get you going:


1. What I want friends and family to understand about my EDS/ HSD
2. My top tips for the newly diagnosed
3. Five devices I couldn’t live without that help me cope with EDS/ HSD
4. The most annoying symptoms of EDS/ HSD

Get your thinking caps on! Articles submitted can be on a number of platforms -you retain full ownership of anything you submit to us. Contact us​ if you have a piece or just want to chat about it. No word count, they can be as long or as short as you like. Vlogs also welcomed of course!