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What You Should Know About Rare Diseases

Paragon Healthcare
A rare disease can impact people from every walk of life. Learn more about talking about your rare disease with your doctor, friends, and family.
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If you or a loved one have been diagnosed with a rare disease, we're here for you. We know that each person is impacted differently, and our heart is to see our patients overcome the challenges they face. Sharing what you know and raising awareness of your condition can help: It could encourage researchers and decision-makers to look at the specific needs of a rare disease population. So, what can you do to help raise awareness of your rare disease?

 

 

Tips for Managing Your Rare Disease

 

 

Teach people about your condition.

 

Talking about your condition may not always be easy, but speaking out can help others learn about it—including your friends, co-workers, or family members. Think about how you want to describe what you're going through (such as your daily symptoms) in the simplest way possible. Explain what others could do to help you if you needed it and encourage them to ask questions. Rare diseases sometimes have long names that are hard to understand or pronounce. You might want to carry small information cards about your condition to share with friends, physicians, or even emergency room workers. It could help them understand the essential facts about the disease and how it might affect you.

 

It's also good to prepare for talking with your doctor about your rare disease. Teaching healthcare professionals about it could lead to earlier diagnoses and better care for other patients in the future. Here's some simple advice for talking with your doctor: First, keep a symptom diary to track your daily symptoms, treatments, and any information from your previous medical appointments. You could either track this information on your phone or in a small notebook. That way, you can carry everything with you to fully explain the condition if you need to and say how it affects you. You could also bring someone to appointments with you for extra support and to take notes.

 

Share the latest research results.

 

Read about the latest research on your condition and share this information with healthcare professionals, other members of your patient community, or your friends. Stay up to date on new treatments that drug companies are working on. Also, many patients choose to answer surveys about their diagnosis or worst symptoms. If you're a Raremark member, check your community's homepage at www.raremark.com to see if any surveys are available for you to take right now.

 

Join conversations in online communities.

 

There are many online options for people with rare diseases to connect with each other, such as patient support groups, advocacy websites, patient blogs, and social media channels. Connecting with other patients through these channels is a great way to show your support for those with rare diseases around the world. You can spread the word about what's happening in your community by sharing posts on Facebook, Instagram, or Twitter. Include the latest scientific findings, reply to a post to share your experiences, or comment with a word of comfort to someone else.

 

Work with patient groups.

 

People with a rare disease often feel alone and isolated because they may not know anyone else with the same diagnosis. That's why patient groups make up such a vital part of the support network for people with rare diseases. Many affected by rare conditions attend, or even run, their own support groups. They bring people together and can give individuals a voice that makes a difference in their community and the world.

 

Fundraise and volunteer.

 

Donating and taking part in fundraising activities also helps to raise awareness of rare diseases. You could fundraise for your cause through sporting events, crowdfunding, or galas. Teaching others about your unique condition can make a difference. If you haven't done so already, now may be a great time to try.

 

At Paragon, we treat a wide range of diseases and conditions. We specialize in injectable and infusible therapies administered in the home setting or one of our infusion centers. Learn more at https://paragonhealthcare.com/

 

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The Paragon Healthcare, Inc. blog provides general information and discussions about health and related subjects. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment. If you or someone you know has a medical concern, you should consult with your health care provider or seek professional medical treatment. Never disregard professional medical advice or delay in seeking professional treatment because of something that you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately. The opinions and views expressed on this blog and website have no relation to those of any academic, hospital, health practice, or other institution.
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