Top Tweets for #RAREparenting
Nothing about us without us!
Got asked today if parents know more about rare diagnosis than the diagnosing clinicians and I'd have to say yes, in my experience - & if not give them a month to deep dive & they'll give any clinical personal a run for their money.
#RareParenting
Our first panel discussion focuses on Equity for People Living with Rare Diseases. It features experts from experts and patient advocates from across the rare disease field #RAiN #RareDisease #RAiNAllireland #RareDiseaseNI
To parent a child with a #RareDisease is a big learning curve. We created #RAREParenting. In this article, we talk about the healing power of tears and coping with fear
Read the full article, and to download our FREE resources for parents here: https://t.co/utoeVbcctk
Life is never plain sailing. Winds change and we adjust our sails to stay on course. Bernd Rosenbichler shares his story of navigating RARE parenthood after his son's diagnosis of Alström Syndrome.
https://t.co/YlUKVTFpmK
#RAREParenting #Goals #Priorities #AlströmSyndrome
Becky 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/C2PXKcI3Zw
Daniel Lewi's journey as a parent changed dramatically when his daughter was diagnosed with Tay-Sachs, his experiences set him on the path to advocate. In this interview he shares his story and advice as a RARE Dad.
https://t.co/Dp5jP2Vgzt
#RAREParenting #taysachs #sandhoff
So, what is it like for a parent who has a child with a #raredisease?
Michelle Fruhschien - @MamaBearforRare shares her story and experience as a #RAREMum!
https://t.co/t7kXq7R6t2
🐻
#RAREParenting
#ppp2r5d #ppp2r5dawareness #raretogether #epilepsy #seizures
Unleash the Power of Laughter and Joy with Johanna Berglein the founder of Respectful Parenting's technique, 'Play Listening'!
🎉😃
https://t.co/hRC1AKbwYL
#PlayTime #Family #Life #FamilyLife #Playing #Fun #Listen #Children #RAREParenting
''Five practical tools to strengthen your family emotionally and lift you out of isolation. You will learn to build your child's self-esteem, foster strong #family bonds and create joyful memories.''
https://t.co/MH2ADFdyJD
#medicalneeds #children #specialtime #RAREParenting
''Seeing our children cry or any child for that matter is uncomfortable, even painful for us as adults.'' Find out how Johanna uses the power of listening and allowing children to express in her techniques. https://t.co/LimUSUP1kb
#RAREParenting #Listen #Children #Family
Becky Tilley’s painful path to diagnosis has led her to an appreciation of the opportunity she now has as a RARE parent to encourage her children to value their uniqueness and to love themselves
https://t.co/xSvMJt0hQi
#KdVs #KoolenDeVriesSyndrome #RAREParenting
Don't forget!📌
Be sure to head over to @RareRevolutionM's amazing #NewWebsite to immerse yourself in all things #RARE!
Their new #Website has their back issues, digital spotlights and #RAREParenting campaign, so head over there now!👉
https://t.co/svKpOadzJU
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
Adam Johnson co-creator of our #RAREParenting top tips is a
Rare Disease DadVocate. Adam will expand on his Top Tips in a future blog post don't miss it!
Find out more about Adam here:
👇
https://t.co/xM2VPyktOx
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
''I feel an obligation to support other families affected by rare disease, as it is very difficult to find professionals who can truly relate to the unique and complicated challenges our families face.''
Dr Al Freedman's #RAREParenting story:
https://t.co/cj7BMB804e
#SMA
Our co-founder, Daniel Lewi speaks candidly to Rare Revolution Magazine about the joys and hardships of parenting his daughter Amélie through #raredisease #taysachs, check it out here 👉 https://t.co/QUUEbdDXLy #rareparenting #sandhoff #thecatsfoundation #patient
Daniel Lewi's journey as a parent changed dramatically when his daughter was diagnosed with Tay-Sachs. In this interview he shares his story and advice as a RARE Dad.
https://t.co/Dp5jP2Vgzt
@Tay_Sachs
#RAREParenting #taysachs #sandhoff
Check out these top 10 tips on how to navigate #Parenthood and life with a #RareDisease by #RareDads @malezebra20202 and Adam Johnson
Don't forget that you can still submit your #RareParenting experience to join @RareRevolutionM's campaign!
https://t.co/w92Q6amnSQ
In our #RareAndEquitable edition we spoke about #GenderBias and if as women our voices are being heard? Have you ever experienced Gender Bias as part of your #RareDisease or #RAREParenting Journey.
How do we redress the balance to ensure we are taken seriously?
Daniel Lewi's journey as a parent changed dramatically when his daughter was diagnosed with Tay-Sachs. This experience eventually led him to found @Tay_Sachs
Dan shares his story and advice as a RARE Dad for @RareRevolutionM's #RAREParenting campaign
https://t.co/ao4Rv04ewO
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