Advocates shining a light this week to focus on very rare disorder
Rare disease awareness week for PNH runs until Sept. 10
From signing up for a patient panel webinar to swapping out social media profile photos, participants in PNH Awareness Week — observed this year Sep. 3-10 — are doing their part to call attention to paroxysmal nocturnal hemoglobinuria (PNH), a very rare acquired disease with which some 500 U.S. residents are diagnosed each year.
To raise awareness of PNH, and funds to support the community, the Aplastic Anemia and MDS International Foundation (AAMDSIF) has a number of resources and activities planned for the event, which this year is themed “Shine a Light on PNH.”
“We encourage the PNH community to share resources and stories with friends, family, and the public so they can learn about this complex and lifelong invisible disease,” the organization states on an event webpage.
Nonprofit aiming to raise $55K this rare disease awareness week
As one example, participants are encouraged to switch their social media profile photo to a special campaign image and get friends and family members to follow suit. There’s also a free, hourlong, interactive PNH Patient Panel webinar scheduled for Sep. 7 at 3 p.m. ET, during which people with PNH can share their experiences and insights with fellow patients.
The nonprofit also will its 17th Annual March for Marrow Walk for PNH on Sep. 10 in Verona, New Jersey. The fundraiser’s proceeds will support research for better treatments and a cure, and foundation programs for patients and families.
While we promise you a fun day with friends old and new from all over the country, we can’t forget what brings us together each year. Besides raising funds, the walk is also a great opportunity to gather together as a community to re-commit ourselves to work together to fight PNH.
The “Day of remembrance and awareness,” which aims to raise $55,000, includes a box lunch, T-shirt, and raffle. Registration is $20 for the in-person event, and $10 to participate virtually. The annual walk is touted as the biggest fundraiser dedicated to helping those with PNH.
“While we promise you a fun day with friends old and new from all over the country, we can’t forget what brings us together each year. Besides raising funds, the walk is also a great opportunity to gather together as a community to re-commit ourselves to work together to fight PNH,” the foundation states on a webpage.
The AAMDSIF also is using the week to call attention to the Global PNH Patient Registry — a collaborative effort between the foundation and the National Organization for Rare Disorders — and getting patients and their family members to sign up. The registry seeks to better understand PNH, and how it progresses over time, with the overarching goal of assisting in the development of new diagnostic and treatment options.
More information and answers to frequently asked questions about the registry are both available for those wishing to learn more.
The AAMDSIF supports patients and families living with PNH and other bone marrow failure disorders.
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