XLID98 1st Annual Conference 2025
2025-05-31 08:00 - 16:30 (America/Edmonton)

Unity Through Rheumatic Diseases: In-Person Event
2025-05-31 08:00 - 17:00 (America/New_York)

Unity Through Rheumatic Diseases: In-Person Event
2025-05-31 08:00 - 17:00 (America/New_York)
Take a Pain Check Foundation is thrilled to invite you to Unity Through Rheumatic Diseases, an in-person event dedicated to promoting collaboration and driving change in rheumatology. Join us on Saturday, May 31, 2025, from 8:00 AM to 5:00 PM EST at the InterContinental Toronto Centre (225 Front St W, Toronto, ON M5V 2X3) for a day of insightful discussions, networking, and empowerment.

Advancing Innovation in Rare Disease Research
2025-06-02 08:00 - 2025-06-03 17:00 (America/Vancouver)
Join researchers, clinicians, and industry leaders to discuss real-world research breakthroughs, novel #ClinicalTrial designs, and how NORD’s Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.

BHI Cafe Scientific-Where the brain and heart meet
2025-06-04 18:00 - 20:00 (America/Toronto)
This event will highlight innovative, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care.

Wilson Disease Event for patients, families, and caregivers
2025-06-07 08:00 - 17:00 (America/New_York)
The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients, caregivers, friends, medical students, physicians and supporters.
They are bringing together the top Canadian doctors who treat Wilson disease.
Great opportunity to network and learn more about treatment options for Wilson disease.
More details and registration link coming soon.
Open to everyone interested in learning more about this rare genetic disorder.
For more information, visit alice.williams@wilsonsdisease.org.

Superficial Siderosis Symposium 2025
2025-06-11 08:00 - 2025-06-13 17:00 (America/Halifax)
Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis.

Community Conversation: The Living Rare Study
2025-06-12 16:00 - 17:00 (America/Edmonton)
Join NORD on Thursday, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases, including how to create an #IAMRARE account, review the consent form, and navigate the platform.

FSHD Connect Europe patient meeting 2025​​​​​​​​​​​​​​​​​
2025-06-13 08:00 - 2025-06-15 17:00 (Atlantic/Azores)
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe.

Webinar - Key Considerations for Including Pediatric Populations with Neurodevelopmental Conditions in Clinical Trials
2025-06-18 12:00 - 13:00 (America/Edmonton)
Speakers: Evdokia Anagnostou and Mayada Elsabbagh Title: Key considerations for including pediatric populations with neurodevelopmental conditions in clinical trials

ALS Canada: Webinar-Driving Progress Forward
2025-06-18 12:30 - 14:00 (America/Edmonton)
In anticipation of Global ALS Awareness Day on June 21, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS.
This engaging session will cover all mission areas, including community services, advocacy, research, and knowledge exchange, showcasing the extensive resources available nationwide.

The Cambridge Rare Disease Showcase
2025-06-18 18:30 - 21:00 (Europe/London)
This annual event celebrates the innovative work and powerful stories emerging from the rare disease community – uniting patient groups, researchers, clinicians, industry professionals, and more from across the UK and beyond.

Defeat Duchenne Canada-Industry Partner Update: REGENXBIO
2025-06-23 16:00 - 17:00 (America/Edmonton)
Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir, Executive Director of Clinical Development at REGENXBIO, as she shares the latest updates on RGX-202, an investigational gene therapy for the treatment of Duchenne muscular dystrophy, and their Phase 1/2/3 AFFINITY DUCHENNE® trial.
This session will provide valuable insights into the science behind RGX-202, trial progress, and what this potential investigational treatment could mean for the Duchenne community. Whether you are a parent, caregiver, clinician, or advocate, this webinar is an opportunity to stay informed and ask questions directly to the team leading this important research.

THE FESTIVAL OF GENOMICS & BIODATA Boston
2025-06-24 08:00 - 2025-06-25 17:00 (America/New_York)
The Festival is designed principally for scientists and clinicians who are working in the fields of genomics, other omics, and/or using biodata , to further research, drug discovery, healthcare and – ultimately – deliver better patient outcomes.

Topics covered include genomics, single cell/spatial biology, multiomics, biodata, cancer research, drug discovery, AI, microbiome, proteomics, liquid biopsy and so much more.

United in Hope: 2025 Global Prader-Willi Syndrome Conference
2025-06-24 08:00 - 2025-06-28 17:00 (America/Denver)

The 2025 CRF International Conference
2025-06-25 08:00 - 2025-06-28 17:00 (America/Detroit)
The Choroideremia Research Foundation (CRF) cordially invites you to join them June 25 – 28, 2025, for their International Conference at the Radisson Blu Mall of America in Bloomington, MN. This event seeks to improve the quality of life for all those impacted by choroideremia (CHM) through educational programming, interactive engagement and networking.

Living Rare, Living Stronger
2025-06-27 08:00 - 17:00 (Atlantic/South_Georgia)

NMD Rounds & Educational Webinars-Bulbar impact of SMA: approach to assessment and treatment
2025-07-08 17:00 - 18:00 (America/Toronto)
NMD4C and MDC are pleased to invite you to a CPD-accredited webinar Bulbar impact of SMA: approach to assessment and treatment. NMD4C and MDC are providing organizational and technical support. This webinar is supported by Novartis through a restricted educational sponsorship with no involvement or influence on program content.

CANAIRI Co-Design Workshop
2025-07-19 10:00 - 14:00 (America/Toronto)
This workshop will co-design resources to support patients and families navigating the era of AI in medicine! The workshop is open to all and we welcome youth, adults, and families!

Rare Disease Day 2026 - Concept Introduction
2025-07-21 07:00 - 08:00 (America/Edmonton)
Company representatives and Rare Disease Day National Partners are warmly invited to this introductory session unveiling the vision for the 2026 campaign.

The 16th International CHARGE Syndrome Conference, “The Grand Adventure,”
2025-07-24 08:00 - 2025-07-27 17:00 (America/Denver)

Platelet Disorder Support Association (PDSA)-Immune Thrombocytopenia Conference 2025
2025-07-25 08:00 - 2025-07-27 17:00 (America/Edmonton)
This year, PDSA will host its 25th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in Philadelphia, PA July 25-27. This year’s patient conference will take place at The Logan, Philadelphia, in the Center City District.

Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
2025-07-30 12:00 - 13:00 (America/Edmonton)
📢 On July 30th from 12:00 – 1:00 pm EST Emine Kocabas, Ashley Berger, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.

7th International Indigenous Voices in Social Work Conference 2025 One Child Every Child: Indigenous Ways of Knowing, Doing, Connecting, and Being for Advancing the Well-Being of Our Future Generations
2025-08-12 08:00 - 2025-08-15 17:00 (America/Edmonton)
Situated between the Rocky Mountains and prairielands of Treaty 7 Territory in what we now call Southern Alberta, Canada, the 7th International Indigenous Voices in Social Work (IIVSW) Conference is a vital forum for sharing Indigenous perspectives and experiences in the field of social work.
This global gathering brings together a diverse and inspiring community of individuals dedicated to Indigenous social work, healing, and systemic change. IIVSW will provide a powerful space to connect, learn, and share knowledge across borders and cultures.
Hosted by UCalgary’s One Child Every Child, the Office of Indigenous Engagement and the Faculty of Social Work, the 7th IIVSW gathering welcomes all people from communities, practice, and research to gather for cultural exchange, shared learning and shared wisdom. From August 12 – 15, attendees will strengthen their spirits while walking parallel paths and sharing ethical space to advance the well-being of children, future generations and communities. Participants will meet, feast, and travel for experiential learning.

ALS Canada: Driving & ALS Webinar
2025-08-13 13:00 - 15:00 (America/Edmonton)
Join ALS Canada and Sunnybrook Health Sciences Centre to learn about the impact of ALS on driving ability, adaptive driving equipment, how an ALS diagnosis may affect insurance, and available alternative options.

PxP Africa 2025: Virtual Meeting August 13, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
2025-08-13 18:00 - 20:00 (America/Edmonton)
PxP Africa is the first regional PxP meeting, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform, shape, and lead meaningful, inclusive studies.

PxP Australia 2025
2025-08-19 08:00 - 09:00 (America/Edmonton)
PxP Australia is a regional webinar, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is “working well together” and Dr. Joan Carlini will be joining the session as a speaker.

Building Bridges "Bridging" Conference
2025-08-21 08:00 - 2025-08-24 17:00 (America/Edmonton)

2025 Transdisciplinary Child & Maternal Health Trainee Research Day
2025-08-26 08:00 - 17:00 (America/Edmonton)
Led by the Alberta Children’s Hospital Research Institute Trainee Association (ACHRITA) in partnership with the Owerko Centre and ACHRI, the graduate portion of this symposium is funded by UCalgary’s Graduate Students’ Association.

Webinar: Patient Partnership 2025 – The Lupus100 Project
2025-08-27 00:00 (America/Edmonton)
Co-developed by ERN ReCONNET and LUPUS EUROPE, The Lupus100 Project is a multilingual resource based on real patient questions about lupus, turning a national patient booklet into a Europe-wide, medically validated information tool. Speakers Eric Hachulla (clinician, ERN ReCONNET), Jeanette Andersen (patient representative, ERN ReCONNET), and Zoe Karakikla-Mitsakou (General Secretary, Lupus Europe) will share how meaningful collaboration between patients and clinicians shaped this impactful communication initiative!
