PNH Foundation

The Aplastic Anemia and MDS International Foundation offices are closed for Labor Day. The website, https://www.aamds.org, is always open! The offices will be open on Tuesday, September 3.

Blood Cancer Awareness starts Sunday! Download this image for your profile or post: https://assets.aamds.org/images/2024-Taking_the_journey-together-BCAM.png
We are Taking the Journey Together!

Did you miss this? Good news for pediatric patients with PNH!
Listen to Dr. Satheesh Chonat explain how the new treatment may be used for Pediatric Patients over 40KG and older than 13.

Rash, weight loss, and then a call from the doctor.
Sandra's journey was scary---a long, hard, journey. But she is thriving now. Please visit her story here: https://www.aamds.org/patient-chronicles/sandra-barnes

Did you receive a diagnosis of Aplastic Anemia, MDS, or PNH? Or, has your disease mutated, making you worried?
Doctors don't get offended when patients seek further evaluation because these diseases are so complicated. Use this feature to see which specialists are near you: https://www.aamds.org/support/find-specialist

The time from diagnosis to transplant was THREE years! Stefania's journey included HATG, ICU hospitalizations, and developing PNH. Yet she never gave up hope. Read her story here: https://www.aamds.org/patient-chronicles/stefania-erazo

This important session on High-Risk was recorded at the recent conference in Philadelphia. Learn about the latest treatments and ongoing research here: https://www.aamds.org/webinar/high-risk-mds-2024-philadelphia-patient-and-family-conference

"I didn’t want my kids to miss out on anything because of me. Nor do I like asking for help." Ashley had severe anxiety and panic attacks with diagnosis -- being a nurse, she knew how bad it could get.
Read about her struggles and survival here: https://www.aamds.org/patient-chronicles/ashley-marie-brown

Patients: What is "reasonable accommodation" and how would you ask for one?
Learn all about the ADA, or Americans with Disabilities Act, from Attorney Christopher Mills in this Podcast Episode: https://www.aamds.org/podcast/understanding-americans-disabilities-act-patients (Transcript on this page)

In this recording, Drs. Linda Burns and Nandita Khera discuss the advances in transplantation for older patients with MDS, or Myelodysplastic Syndromes. Learn more about the risks and benefits of bone marrow transplants, focused on this age group, here: https://www.aamds.org/webinar/transplant-older-patients-mds

David Beck, MD, PhD, and Anna Cantor, MA, MS, CGC, discuss VEXAS syndrome, a recently discovered auto-inflammatory condition affecting older adults. VEXAS syndrome often overlaps with myelodysplastic syndromes (MDS) with autoimmune disorders (AD). Watch now: https://www.aamds.org/webinar/vexas-syndrome

Are you a patient who has experienced iron overload?
What causes this condition?
Why does it happen to patients with aplastic anemia, MDS, or PNH?
Find answers to these questions and more in this recent webinar recording! Watch now: https://www.aamds.org/webinar/blood-transfusions-and-iron-overload

Did you miss this?
Supportive (Palliative) Care ➡Myths and Realities about Pain Management
Watch this session recording from the Los Angeles Patient and Family Conference: https://www.aamds.org/webinar/palliative-care-2024-los-angeles-patient-and-family-conference-session

She needed so much blood! The marrow biopsy showed Aplastic Anemia.
Though her treatment was rough, Kami came through, though she escaped the hospital briefly to get married!
Read Kami's story here: https://www.aamds.org/patient-chronicles/kami-murphy

Aplastic Anemia is a serious, rare, complex, condition. Specialist and former AAMDSIF grantee Daria Babushok, MD, PhD, explains the condition along with treatments and management in this session from the Philadelphia Patient and Family Conference:
https://www.aamds.org/webinar/aplastic-anemia-2024-philadelphia-patient-and-family-conference

Which advances are helping patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria?
Find out in this recording from the recent Patient and Family Conference with Vinod Pullarkat, MD, MRCP: https://www.aamds.org/webinar/advances-therapy-pnh-2024-los-angeles-patient-and-family-conference

What is Chronic GVHD, or Graft VS Host Disease? How do you manage it?
Find out in this session recording from the 2024 Los Angeles Patient and Family Conference: https://www.aamds.org/webinar/living-chronic-gvhd-2024-los-angeles-patient-and-family-conference

How do you prevent GVHD, or how do you treat it? Graft VS Host Disease can occur with any transplant. Find out the possible therapies your specialist may proscribe to prevent or treat this condition in this recent session from the Philadelphia conference! https://www.aamds.org/webinar/gvhd-graft-vs-host-disease-2024-philadelphia-patient-and-family-conference