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Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disorder — only about 6 in 1 million people are diagnosed each year. If you have PNH, you may feel like you’re going through it alone, but you’re not. There are others living with PNH, and you can get support from various organizations and groups — even if you haven’t met someone else with PNH yet.
Awareness of PNH is spreading, and a growing network of online communities helps people with PNH connect with others around the globe. Below are some trusted places to find support and helpful resources.
The Aplastic Anemia and MDS International Foundation (AAMDSIF) began in 1983. This organization helps build community among people with PNH and other conditions, including:
The foundation educates healthcare providers on these diseases, supports research into new treatments, and advocates for people living with these conditions. The AAMDSIF website offers easy-to-understand reading materials about PNH and lists virtual support groups that meet at scheduled times. You can register online for an invitation to join. You can also search for in-person support groups by choosing your state from a drop-down menu.
For immediate support, you can reach out to the AAMDSIF HelpLine. Trained specialists are available weekdays from 8 a.m. to 4 p.m. Eastern time. Call 800-747-2820, option 2, or start a live chat on the website. You can also email help@aamds.org.
PNH Support, a U.K.-based charitable organization founded in 2015, aims to connect people with PNH in England, Wales, and Northern Ireland. Membership is free for people with PNH and their loved ones. Members can join a private Facebook group and take part in live and virtual events. PNH Support also offers:
PNH Support recognizes Rare Disease Day on February 28. Their Super Rare Campaign encourages members to host fundraisers to support PNH research. You can visit their website to see the calendar of events and explore ways to get involved.
Established in 2018, the PNH Global Alliance brings PNH communities from around the world together to coordinate efforts and share resources. Along with hosting regular virtual meetings, the alliance holds an annual in-person meeting. So far, 10 groups from nine countries have joined.
The PNH Global Alliance has four main goals:
On the website, you can find PNH-related webinars and a map of support groups — many with websites, contact info, and Facebook pages. There’s also a map showing the locations of PNH specialists in different countries.
People with PNH and their caregivers can benefit from building a strong team of healthcare providers to help with managing various challenges when living with this condition.
Most people are diagnosed with PNH by a hematologist — a doctor who specializes in blood and bone marrow disorders. In addition to your hematologist and primary care doctor, health professionals such as the following may also be helpful, depending on your needs and symptoms:
These specialists can help you manage symptoms, improve your quality of life, and feel less alone on your journey with PNH.
Clinical trials offer a way to explore new treatment options and connect with a team of providers and others living with PNH. You can learn about trials through your healthcare provider or by looking online.
One helpful resource is ClinicalTrials.gov, an online database where you can search for current research studies for PNH. If you find a trial that interests you, talk to your doctor and reach out to the study team to learn more.
Thanks to research from clinical trials, people with PNH have a longer life expectancy and better treatment options than in the past. By joining a clinical trial, you may gain early access to promising therapies that aren’t yet widely available. You’ll also receive close monitoring and added support throughout the study.
Online communities for PNH let you connect with others who understand what it’s like to live with a rare disease. You can find online support groups through many of the organizations listed above. You can also find PNH communities on platforms like Facebook, Reddit, and myPNHteam, where people who might never have met otherwise can come together.
Always follow your healthcare provider’s recommendations when it comes to medical decisions. However, online communities offer another layer of support that’s hard to find elsewhere. Whether you have PNH or are caring for a loved one with this rare disease, connecting with others can make a big difference in your daily life.
On myPNHteam, people share their experiences with paroxysmal nocturnal hemoglobinuria, get advice, and find support from others who understand.
What resources have you found for support? Let others know in the comments below.
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