Top Tweets for #RAREParents
Have you seen our top tips for #RAREParents? Becky Pender, our community engagement senior associate, shares her advice on parenting a child with a #RareDisease.
To continue reading and download more of our RARE Resources, visit https://t.co/f9hpra5585
This is a model pioneered by amazing #RareParents in the UK; who continues to inspire me day by day w/ the length they go to do best by their #RareKids. I am so proud to be involved with the network and directly with many member orgs @Ring20UK @CureDhdds @UKTSA @adamclat (2/4)
Have you seen our top tips for #RAREParents? Our community engagement associate, Becky Pender, shares her advice on parenting a child with a #RareDisease.
To continue reading, visit https://t.co/f9hpra5585
When she is fully recovered from this acute medical issue, her chronic medical challenges come back into focus.
There is no time when #rareparents relax completely.
Neither do the siblings. They're the invisible victims of the disease.
#QOTD: In the approach to #ParentsDay, let's take a moment to appreciate the resilience of all the #RAREParents and guardians out there who fight for a diagnosis, despite #MedicalGaslighting and judgement.
https://t.co/2YtNMlFUcX
#FamilialColdAutoinflammatorySyndrome
Today is #NationalBereavedParentsDay.
With that in mind, we put together a resource for #RAREParents to refer to during these troubling and often distressing times. At RARE Revolution, we're with you every step of the way.
Read and download here: https://t.co/f9hpra5585
Our Rare Family Dynamics sessions continue to be profoundly deep and rich. The quality of loving support we offer to each other is magnificent. @angelaidcares
https://t.co/GYZMeWRloX
#caregiverretreat #rareparents #raredisease #globalgenes #patientadvocacy #caregiver #caregivers
Sustaining healthy relationships as a Rare Parent can be challenging. You are constantly being pulled in many directions, being asked to give all of yourself to others. See our blog for more. #rareparent #rarefather #rarediseaseparent #rareparents
https://t.co/rUNF2bHAgU
#RDD2023
Watch out for our #rareparents on @VirginMediaNews at 5:30 this evening as they celebrate #rarediseaseday2023 with their swim for rare at Portmarnock beach, Dublin
Indvidually rare, collectively common #RareDiseases
#NewbornScreening
#CathalsLegacy
Much love to the Martin Family❤️like all the rest of us #RareParents they want no one else to go through the trauma that they have. It's why we do what we do.
Les and Lynda Martin, from Rathnew, Co Wicklow, discovered their son Cathal had metachromatic leukodystrophy (MLD) at 18 months old when he went from being a healthy child to having problems walking https://t.co/SkA3xabUQq
I vividly recall being dismissed by pediatricians when my son was deathly ill at 4 months old. It took nearly 3 weeks and an ER visit to finally be heard. That was back in 2005. I’m curious, how many #RareParents were dismissed when you approached your child’s doctor? #RareTruth
@sujas15 @22Q11_Ireland @RareDiseases @eurordis Always so wonderful to hear both Anne & Àine speak on behalf of the @22Q11_Ireland community & the #rarediseasecommunity Such passion for advocacy, action & acceptance. #rarefamilyadvocates #livedexperience #22q11 #rareirelandconference2022
When #RareDiseases are individually rare but collectively common
what happens when you can't get what you need as a community?
👇
#RareParents doing it for themselves.
@RoisinShortall @neasa_neasa @DonnellyStephen @davidcullinane @ColmBurkeTD
The preparations are well underway for our first information day & conference.
We will have information stands from some of Ireland’s leading charities including; @JackandJillCF @InclusionIre @CarersIreland Little Blue Heroes @BUMBLEance @22Q11_Ireland @NfIreland @PWSAI
Rebecca Pender shares her wealth of wisdom as someone who has been through the ups and downs of #RAREparenting.
Please READ, LEARN, SAVE & SHARE our 10 Top Tips for RARE parents of RARE children:
https://t.co/C2PXKcqsAW
Behind every RARE Child are RARE Parents giving everything they have to support and care for their loved ones. In this campaign we are highlighting the experiences and sharing advice from our #RAREParents.
#RareDisease #Family #FamilyLife #RAREParenting #Children #Parenthood
#RareParents are HMP (Highly Motivated Parents) and have been living with 'restrictions' of all sorts for years.
As a doctor in Genetic Medicine, many of my patients are kids with exceptionally rare genetic disorders. In clinic I ask parents if they (parents) have been vaccinated vs Covid. >95% have. They're smart, invested in their kids, they care, they understand. #GetVaccinated
Behind every RARE Child are RARE Parents giving everything they have to support and care for their loved ones.
This September we are highlighting the experiences and sharing advice from our #RAREParents. 💙 #comingsoon #campaign #support #awareness #parenting #raredisease
'rare' parents already know failure, disappointment, setback, even heartbreak - I've yet to meet one without courage.
#RareParents with #RareCourage
@DrZeroCraic "If you choose courage, you will know failure, disappointment, setback, even heartbreak. That's why we call it courage and that's why it's rare'
I’ve gotten to know some amazing people during my #raredisease journey. Lori and a Grace are just two of them. #militaryfamily #LEMS #Lamberteatonmyasthenicsyndrome #adoption #rareteen #rareteens #Florida #floridamom #floridateen #parenting #rareparents #nord #globalgenes
Columnist Dawn DeBois speaks with her friend Lori Dunham, whose teenage daughter has Lambert-Eaton myasthenic syndrome, about raising a child with LEMS. Read Dawn’s column here: https://t.co/0NauXM8ZBa
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