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Luxelifewith3 Apr 22
here from MI and so excited. I have 2 yr old twins with a rare disease and have been trying to balance life for their big sister who is 5
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Fighting for a Cure for Fd Apr 22
Hi , I'm Colleen from Virgiana!
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CheckRare Apr 22
CheckRare is here
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Mary Dunkle Apr 22
A3: The rare community is incredibly supportive. Connect w/ others experiencing similar challenges. Remember NORD's key message: Alone we are rare. Together we are strong.
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Mary Dunkle Apr 22
A4: Keep lines of communication open w/ all children in the family. Knowing that you care & they can share info w/ you is important first step to combat bullying.
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Mary Dunkle Apr 22
A5: Empower healthy w/ knowledge & by including them as much as possible in family discussion of medical issues & decisions.
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Scandic health Apr 22
Sorry I am late , my 14 lives with and my oldest is 17 and lives with a mental illness 👋🏽 - first time here
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CDH Stars and Angels Apr 22
Replying to @RareDiseases
First, parents can keep communication open, allowing the sibling of the child with a rare disease to discuss how they feel. Second, keeping calm in emergency situations and assuring them that their sibling is in great hands medically makes a big difference
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CDH Stars and Angels Apr 22
Replying to @RareDiseases
If it isn't possible to remove the child from the situation where they are being bullied, then parents can take action to assure that the bullying doesn't happen again. Monitor online activity and set up meetings with school staff and other parents if necessary
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Bridge the Gap - SYNGAP Education & Research Fnd Apr 22
We support families through our education Family Meetups! BIGGEST BENEFIT! Bringing families from all over into one room so they aren’t feeling alone in the world! What kinds of things do your patient orgs do to bring families together?
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SupportiveHopeNetwork Apr 24
Replying to @RareDiseases
My 4th child, Benjamin, was born 2 1/2 years ago with Trisomy 18 aka Edwards syndrome. This disorder affects many of the systems and most with T18 do not survive their birth let alone their 1st year. He is a miracle!
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Maya Apr 22
A3: Not a single parent but I think finding support is vital. Can't always have it in person, but online communities can be amazing! Mine has kept me emotionally afloat often over the years.
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Virginia Higgins Apr 15
RT NFED_ORG "RT CheckRare: We will be participating in , a convo w/ RareDiseases & texaschildrens on raising a child w/ & caring for the other children on Monday, April 22 1pmET! Hope to chat w/ you then! "
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Maya Apr 22
A2: We find ways to adapt family activities so we can all participate. That said, my other kids ARE allowed to do things their brother can't. My soccer loving son needs to be able to develop his talent & his bro needs to learn to cope w/ disappointment
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Bridge the Gap - SYNGAP Education & Research Fnd Apr 22
Include them in advocacy activities.. show them their voice is important!
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Maya Apr 22
A2: We are so lucky that created Camp Victory, where my son can participate in all the traditional camping activities and meet other kids with his dx!
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John Prince Apr 22
RT : A therapist gave me a great tip once. She said do all of the rare kid stuff in one block of time as much as possible. That way it doesn’t feel like you are constantly doing medical-related tasks for them.
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Texas Children's Apr 22
Also, check out this podcast and listen to other families talk about living and loving families with rare disorders!
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KAL Research Initiatives Apr 22
Replying to @RareDiseases
Tuning in from Houston, TX!
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The Children's Inn Apr 22
A6: “We provide lodging & support services to seriously ill children & their families. We make it easier for families to travel from their homes, sometimes far away, to commit to clinical trials.” - Inn CEO . Learn more:
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