Why start your own national association?
Creating your own country association of IgG4-RD patients allows people to meet others living with the disease, share their stories, and find a listening ear at the moment of diagnosis. Just as importantly, it lets you represent those patients to the medical world, the pharma industry and government — as an advocate for everyone affected.
Setting one up is not easy: legal procedures, opening a bank account, finding patients within GDPR rules, building good governance. The Federation has been through it all at European level, and we’re here to help you do the same in your country.
- A community where patients meet patients and share their journey
- A national voice in conversations with doctors, pharma and government
- Voting rights at European level within the Federation
- Access to a Federative Medical Board of European specialists
- Greater visibility through a shared, recognisable European brand
Everything you need to get started
When you set up a national association affiliated with the Federation, you don’t start from scratch. We provide legal, financial, brand and digital support — all available the moment you have a formal legal statute.
Statutes
Examples of statutes from existing national associations and drafting support.
Initial financial support
A contribution to start the legal setup process, subject to a simple agreement.
Medical Board guidance
Help establishing your association’s Medical Board and connections to local IgG4-RD experts.
Your own website
A ready-to-fill yourcountry.igg4.eu, free of dev costs, with a multilingual CRM.
Logo & brand bible
Your own country logo, designed alongside our brand toolkit creator, plus the full brand bible.
Templates
Presentations, banners, posters, leaflets, business cards and social media — all in the joint brand.
Canva subscription
Pre-loaded with your logo and brand components, free of charge for the first year.
Real patient photography
A free-of-rights image database of real patients and doctors — no AI or stock illustrations.
Board photography fund
A €600 contribution per association for board members’ photography, with shared rights.
Apply to start your country’s association
If you are an IgG4-RD patient with a genuine intent to set up an association in your country, complete our short application form. We’ll review your submission and get in touch about the next steps and the toolkit support available to you.
Before you apply, please check that you meet these criteria:
- No IgG4-RD association in your country is yet affiliated with the Federation
- You agree to the Federation's values and to the 'single voice, single look' principle
- You meet the criteria for registering a patient association in your country
Carsten Sørensen
Patient & Treasurer, Denmark
As a co-founder and chair of the federation, I am proud to lead a community advocating for better recognition and care for IgG4-RD.
About the European Federation IgG4-RD
We are the bridge between you, the patient, be it as a direct member or through your own national association and the medical world and wider community. We connect knowledge, compassion, and advocacy across Europe for those affected by IgG4-Related Disease.
