A day for the NF community
NF Community Day & NF Best Practice 2026
English transcript &
Translations in many languages
Available during all talks
Date: November 15th, 2026
Time: 8:00 – 16:00 (CET)
Sunday, November 15, 2026 | Vienna, Austria & virtually
NF Community Day & NF Best Practice
The NF Community Day 2026 brings together patients, caregivers, and patient advocates from across Europe living with Neurofibromatosis type 1, NF2-related Schwannomatosis and Schwannomatosis. It is a day to learn, connect, and be inspired — together with fellow members of the NF community, patient advocates as well as medical experts and researchers.
The NF Community Day takes place directly following the European Neurofibromatosis Conference (EU NF 2026), the scientific conference for NF researchers and clinicians held in Vienna. This means you will hear the latest research findings translated into plain language, straight from the experts who presented them just a day before.
Why Join Us
The NF Community Day offers a unique opportunity to connect with others who understand the realities of living with Neurofibromatosis. Participants gain direct access to current research, practical guidance for daily life, and the chance to exchange experiences with peers, experts, and patient organisations from across Europe. It is a space to build knowledge, strengthen connections, and be part of a growing European NF community.
NF Community Day & NF Best Practice
Date: November 15, 2026
Location: Kardinal König Haus, Kardinal-König-Platz 3, 1130 Vienna, Austria
AND Virtual Participation
Language: English, German, Live transcript
AUDIENCE
Who is this day for?
The NF Community Day is designed for:
- People living with NF1, NF2-related or non-related Schwannomatosis
- Parents and caregivers
- Siblings and family members
- Patient advocates and representatives of national NF organisations
The program is designed to be understandable without medical background knowledge, interactive, family-friendly, inclusive, and emotionally supportive.
NF Patients United
What to expect
- A plain-language summary of the scientific conference findings.
- Community-nominated awards for outstanding NF1 and NF2-SWN research
- Best-practice presentations from NF patient organizations across Europe
- Parallel breakout sessions for the NF1 and NF2-SWN/Schwannomatosis communities
- Time for networking, exchange, and community building
Join us
Registration
To register for the on-site or the virtual participation at the NF Community Day & NF Best Practice, please fill out the registration form below. Once registered, you will receive all further info per email.
08:00 – 08:30 Registration & Coffee
08:30 – 09:00 Welcome Words
09:00 – 10:00 Summary of the Scientific Conference — Interactive Panel Discussion
10:00 – 10:45 NFPU Community Awards for NF1 and NF2-SWN Research
10:45 – 11:15 Break
11:15 – 12:30 Best Practices of NF Patient Organizations
12:30 – 13:30 Lunch & Community Networking
13:30 – 14:45 Parallel Sessions: NF1 & NF2-SWN
14:45 – 15:00 Break
15:00 – 16:00 Joint Final Session & Future Outlook — Interactive Panel Discussion
16:00 – 16:15 Closing Words & Farewell
The detailed program below will be updated as speakers and topics are confirmed — check back for the latest version.
The 2026 EUROPEAN NF Conference
Our NF Community Day will take place right after the bi-annual scientic NF Conference in Europe, which is aimed at healthcare professional and researchers.
Are you a healthcare professional or researcher?
Then register for the European NF Conference here:
EVENT - OVERVIEW:
SUNDAY, 15. NOV 2026
Community Day & BEST PRactice
The NF Community Day 2026 is a one-day event for NF patients, caregivers, and patient advocates.
TICKETS:
For Patients, caregivers & ambassadors – €49
(€19 reduced fee for registrations before Aug 30th! Use promo-code EARLYBIRD at the checkout)
For Industry representatives – €249
VIRTUAL PARTICIPATION – FREE
Monday, 16.Nov. 2026
CAPACITY BUILDING Day
The NF Capacity Building Day is intended for board members of patient associations. The event provides practical tools, templates, and strategies to help participants strengthen the leadership and management of their patient organisations, tailored to the needs of the group.
TICKETS:
For board members of NF associations – €49
For NF associations outside NFPU admission to this event is required. For this please contact us at info@nf-patients.eu
TUESDAY, 17.Nov. 2026
TEAM BUILDING DAY
The Team Building Day offers members of patient associations an opportunity to explore Vienna together and so strengthen the NF community work.
TICKETS:
For Patients, caregivers & ambassadors – FREE
Patient Advocacy * patient involvement * NF research * educating young ambassadors
Monday, November 16, 2026 | Vienna, Austria
NF Capacity Building Day
On November 16, 2026, the NF Capacity Building Day brings together board members of Neurofibromatosis (NF) patient organisations from across Europe. The event provides practical tools, templates, and strategies to help participants strengthen the leadership and management of their organisations, tailored to the needs of the group.
By learning from more established organisations, newer groups can save time and effort, and develop more consistent and effective support systems for people living with NF.
Why This Matters
Many of the challenges faced by patients with Neurofibromatosis and their families are shared across countries. Organisations across Europe regularly navigate similar issues — regardless of size, age, or region. Coming together to learn from one another helps every organisation build stronger, more sustainable support for their communities.
Session Topics
Sessions will address challenges common to NF patient organisations across Europe, including:
- Ensuring access to care
- Managing the transition to adult healthcare
- Building relationships with clinicians
- Engaging effectively with policy makers and European institutions
AUDIENCE
Who Should Attend
This event is designed for board members of NF patient associations.
NF Patients United
Networking
Beyond the sessions themselves, the day offers a valuable opportunity to connect with peers from other organisations — a chance to exchange experiences, build relationships, and lay the groundwork for future collaboration across Europe.
Join us
Registration
Admission for the Capacity Building event requires prior approval, please write to info@nf-patients.eu
Tuesday, November 17, 2026 | Vienna, Austria
Team Building Day
To close out the conference days, we invite you to spend a day exploring Vienna together — connecting informally with fellow participants and local hosts. The program is tailored to the group and includes exploring the city together and a shared lunch. It’s a relaxed, social close to an intense few days, offering time to unwind, build lasting connections, and experience the city alongside the NF community.
Registration required.
Cooperation
The NF Best Practice Summit is carried out by NF Patients United together with:
Support
The NF Best Practice Summit is kindly supported by:
ABOUT NFPU
NFPU stands for NF Patients United, and is Europe’s umbrella organization around Neurofibromatosis. By combining the efforts of all organizations, we try to find answers on Neurofibromatosis. Find out more here.
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© 2026 NF Patients United
