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!

WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
2025-08-28 06:00 - 07:30 (America/Edmonton)
This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.

2025 RARE Drug Development Symposium
2025-09-03 08:00 - 2025-09-04 17:00 (America/Denver)
Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes in partnership with Boston Children’s Hospital is designed to equip advocates with the knowledge, skills, and connections to navigate early-stage research with confidence. During this 1.5 day event, attendees will have a mix of main stage sessions, targeted breakouts, group presentations, and hands-on workshopping. Whether you’re initiating research efforts or looking to refine your strategy, this symposium offers practical insights to accelerate progress in research strategies and activities.

6th International Hypothalamic Hamartoma Symposium
2025-09-04 08:00 - 2025-09-05 17:00 (America/Belize)
Presented by Hope for HH and Hospital Sant Joan de Déu Barcelona, this symposium will gather leading experts, patients, and caregivers from around the world to share the latest research, clinical advances, and treatment strategies for Hypothalamic Hamartoma (HH)! Alexis Arzimanoglou and Helen Cross are part of the Symposium Committee.

Back-to-School with PH: Q&A Session
2025-09-04 11:00 - 12:00 (America/Edmonton)
Getting ready for a new school year can be exciting—but also challenging when pulmonary hypertension (PH) is part of the picture.
Join in on Thursday, Sept 4 at 11:00 AM EST for a virtual round table with Janette Reyes, PH Pediatric Nurse at SickKids Hospital.

Rare Trials Summit
2025-09-09 08:00 - 2025-09-10 17:00 (America/Edmonton)
Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.

2025 C-Path Global Impact Conference
2025-09-09 08:00 - 2025-09-11 17:00 (America/Vancouver)
As C-Path celebrates its 20th anniversary, CGIC 2025 stands out as a milestone event—bringing together a global community dedicated to advancing medical innovation and improving patient outcomes.
Whether you’re joining us from industry, regulatory agencies, academia, patient organizations, or as someone with lived experience, you’ll find valuable insights, thought-provoking discussions, and meaningful opportunities to collaborate.

PxP2025
2025-09-09 08:00 - 2025-09-12 17:00 (America/Edmonton)
The PxP (For Patients, By Patients) conference will be September 9-11 (for those in Europe, Africa or North and South America), or 10-12 (Asia and Oceania). This free, virtual event aims to bring you a wealth of knowledge, skills and resources on Patient Engagement in health research.

PCSI 2025
2025-09-10 08:00 - 2025-09-12 17:00 (America/Toronto)
From September 10 to 12, 2025, the 37th PSCI conference will be held at the Quebec City Convention Centre under the theme: “Patient Grouping as a Driver of Value in Health: The Patient at the Heart of Our Decisions.” The topics will be:

Innovations in case-mix, data and technology.
Advancements in coding, classification systems, and data quality.
Case-mix and costing beyond funding.
From case-mix to policy: the patient at the center.
Connecting funding with patient outcomes and quality of care
Using costing and funding to create value and demonstrate productivity.
Artificial intelligence & case-mix: in service of patient-centered care.

On September 9th, there will be a day of pre-conference workshops.
