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IPPF South Florida Virtual Support Group Meeting

Connect Virtually with Other Pemphigus and Pemphigoid Patients and Caregivers in South Florida on July 13th. Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. You are not alone! Register at: https://fundraise.pemphigus.org/group_sfl_july_2025

KdVS Awareness Day July 17th

Koolen-de Vries Syndrome (KdVS) is a rare genetic condition caused by a microdeletion on chromosome 17 or a variant in the KANSL1 gene. First identified in 2006, KdVS affects approximately 1 in 30,000 individuals worldwide. It is characterized by developmental delays, low muscle tone, intellectual disability, and distinctive facial features. Many individuals with KdVS also …

Community Conversation: Finding Strength in Self-Acceptance

Join us for a virtual community conversation on Thursday, July 17 at 6pm ET! In this uplifting and supportive community conversation, panelists will explore how to embrace life as it is. Together, we’ll discuss how accepting our realities can lead to greater emotional well-being, stronger self-advocacy, and deeper connections with others. Whether you are newly …

2025 TSSUS National Turner Syndrome Conference

The 2025 TSSUS National Turner Syndrome Conference will be held in Portland, Oregon on July 18-19, 2025. This annual event is a program of the Turner Syndrome Society of the United States and is in it's 34th year, The TSSUS conference brings together individuals with Turner syndrome, their families, and TS experts in a welcoming …

National Scleroderma Conference

As you may know, this year’s National Scleroderma Conference will be held in St. Louis, Missouri, from July 18-20, 2025. This year’s conference, with nearly 50 sessions, workshops, and networking opportunities will attract 500+people to our live, in-person event, including those living with scleroderma, caregivers, family members, physicians, and research scientists.   Conference information, including …

Aplastic Anemia and MDS International Foundation Patient and Family Conferences

Tagged in: Rare Cancer Coalition

AAMDSIF hosts Patient and Family Conferences around the United States each year. Conferences are free to attend and include presentations by the world's leading medical experts in rare blood cancers and bone marrow failure diseases. It is also an incredible and important opportunity for patients and caregivers to connect with one another in person and share support, …

🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings

Tagged in: Rare Cancer Coalition

Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …

Platelet Disorder Support Association (PDSA) 25th Annual ITP Conference

We’re More Than Our Platelet Counts—Let’s Talk Immune Thrombocytopenia Together! Join a community that speaks your language. The Platelet Disorder Support Association (PDSA) is hosting its 25th Annual ITP Conference that brings patients, families, and experts together to talk real-life solutions and share lived experiences in Philadelphia, PA July 25-27th. You’ll hear from cutting-edge researchers …

Northern California IN-PERSON Support Group Meeting Saturday, July 26, 2025

Connect In Person with other Pemphigus and Pemphigoid Patients and Caregivers in the Northern California area on July 26th! Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. You are not alone.  Register here! https://fundraise.pemphigus.org/groups_nocal_July_2025 • 12:00pm - 3:00pm PST UC Davis Dermatology Conference Center, 3301 C …

Multiple Sulfatase Deficiency World Day July 30th

MSD World Day, celebrated on July 30, is a day to acknowledge Multiple Sulfatase Deficiency, to shine a spotlight on those impacted by this ultra-rare disease, and to raise awareness around the world. Commemorations include a fundraising campaign, state proclamations, building/landmark illuminations, and other events planned by our partner MSD foundations in Argentina, Ireland, Spain, …

Cure LBSL externally-led Patient-Focused Drug Development meeting on Aug. 1

Cure LBSL will host the LBSL externally-led Patient-Focused Drug Development meeting on Aug. 1 at the National Building Museum in Washington from 10 a.m. to 3 p.m. This hybrid event is open to everyone and will elevate the voices and perspectives of those living with LBSL. Cure LBSL also welcomes LBSL patients from around the …

🌟 2025 LFSA Youth & Young Adult Workshop

Tagged in: Rare Cancer Coalition

🌟 2025 LFSA Youth & Young Adult Workshop Dates: August 15–17, 2025Location: Boston, MAEligibility: Ages 13–25 with Li-Fraumeni Syndrome (LFS)Registration: Interest Form The LFSA Youth & Young Adult Workshop is a transformative event designed to empower young individuals living with Li-Fraumeni Syndrome. This workshop offers a unique opportunity to connect with peers, engage with experts, …