Celebrating you this Rare Disease Day

[Skye_MC]

Happy Rare Disease Day everyone! Today, we would like to take a moment to reflect on your strength, resilience, and courage.

Those who are affected by pancreatitis often face challenges that can be physically and emotionally draining. This is why support groups, like the one we have here, are so important. We would like to take this opportunity to ask our members how they plan on celebrating Rare Disease Day today. Are there any events or activities that you are participating in to raise awareness about pancreatitis? If so, we would love to hear about them. You can also join Mission: Cure in our efforts to bring awareness by joining the #MyPurpleStripes challenge.

mission-cure.org/my-purple-...

As a non-profit organization that is dedicated to supporting those affected by pancreatitis, we are constantly inspired by the stories of our members. Your strength and resilience in the face of adversity are truly remarkable. We are honored to be a part of your journey and to offer a safe and supportive space through HealthUnlocked for you to connect with others who understand what you are going through.

On this Rare Disease Day, we would like to extend our gratitude to each and every one of you. Your presence in this group makes a difference, and we are proud to be a part of a community that is so committed to supporting each other.

Thank you for all that you do, and we look forward to continuing our work together.

[madonbrew Pioneer]

Hi Skye, I haven't heard of rare disease day here in the UK but I definitely have one!! IgG4 RD with AICP.

I had an appointment yesterday and my IgG4 levels are getting too high again so I'll have another round of Rituximab hopefully within 6 weeks. That seems to keep things at bay for about 18 months-2 years, then I need the next round.

It sounds like a great way of educating people about pancreatitis though, along with other rare diseases!

[Skye_MC Administrator in reply to madonbrew]

I hope your appointment went well and everything levels out! I believe the Rare Disease Day partner for the UK is run by the Genetic Alliance. Here's their website if you're interested in checking it out! raredisease.org.uk/

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hi, I had heard of rare disease day as I have lived with ADULT ONSET STILLS DISEASE since I was 17 which is an autoimmune condition in the rheumatology field. I’m currently having tests for pancreatic or liver cancer but suspect I have chronic pancreatitis as part or organ involvement from Stills Disease so looks like I may have two rare diseases. I always knew I was special 😉. This forum is a great source of help and supporting information, thank you.