The Children’s Rare Disorders Fund

Dedicated to curing rare genetic disorders

[rareparenting @rareparenting]

Check out our #giftguide for #switchadapted toys! #nonverbal #nonspeaking #slp https://t.co/bU4YMCNN6Z

[Rare Epilepsy Network @RareEpilepsy]

Extending warm welcomes to NEW REN members: @cyfip2network and @thecrdfund - 2 more organizations providing hope to #rareepilepsy families! Welcome!

[rareparenting @rareparenting]

#RareDiseaseDay is almost here! Who do you love? #ILoveSomeoneRare

[rareparenting @rareparenting]

Are you getting involved for #RareDiseaseDay? It's coming up February 29th! There are many easy things you can do to show some support - check them out! https://t.co/fTqkWeuo0A

[rareparenting @rareparenting]

Why does it costs millions to cure #rarediseases? Why do parents foot the bill? Why isn't big pharma, or any pharma, helping out? We take a look at the stages and costs of research, and why and when pharma steps in: https://t.co/IO9T2hjG5Q

[The Children’s Rare Disorders Fund @thecrdfund]

Have you donated for #givingtuesday yet? This is your friendly reminder to help us cure #foxg1syndrome! Click here to donate: https://t.co/Kizq9Gfbci

[The Children’s Rare Disorders Fund @thecrdfund]

November is #FOXG1 Awareness Month! Check out our video to learn a bit more about #FOXG1Syndrome.

[Effie Parks @OnceUponAGene]

Parents of children with #RareDisease: Would you like to contribute to improving the way DX's are delivered? I've closely collaborated with genetic counseling experts throughout this research project, and I'd be grateful if you could participate.
#GeneticTesting

[The Children’s Rare Disorders Fund @thecrdfund]

The CRD Fund is accepting proof of concept proposals in our continued effort to cure #Foxg1 Syndrome. Learn more at https://t.co/R9bhngGcRZ

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Following the launch of our stage one report assessing the need, usefulness & next steps for a rare patient passport, we’re launching phase 2!

We need 200 people living with a rare condition, or their caregiver, to trial a personalised passport https://t.co/PGbZKR9q6n

[Emily Barnes @emilybarcar]

Our Massachusetts annual #sprint4syngap event was an amazing experience and a powerful day for our #raredisease community! @cureSYNGAP1

[CDKL5 - IFCR @CDKL5_IFCR]

🥳Today was our Massachusetts CDKL5 Family Meet Up 2023! Despite the rain, we had a fabulous time together at the Worcester Red Sox!

Many thanks to our event sponsors:
💫@MarinusPharma
💫@ultragenyx
💫@OvidRx
💫@UCBUSA

[Patient Worthy @PatientWorthy]

The first participant has been dosed in a Phase 1 study evaluating VGA039 for von Willebrand disease. Learn more: https://t.co/qS7z0O8CEg

#VonWillebrandDisease #VWD #BleedingDisorders

[Global Genes @GlobalGenes]

Today we recognize children with an #Underdiagnosed rare disease. Trying to find the full diagnosis for your child's condition to get a specialized treatment can be a frustrating experience. Check out https://t.co/kG44kfJkn3 for more resources!
#UnderdiagnosedChildrensDay

[National Human Genome Research Institute @genome_gov]

How do researchers find genomic variants associated with complex diseases? They study the genomes of groups of people who have the same disease and compare them to the genomes of people who do not have that disease. Learn more: https://t.co/IhhMNHLXaU

[The Children’s Rare Disorders Fund @thecrdfund]

Enter to #win hotel stays, luxury handbags and jewelry, sports tickets and more! Support #RareDiseaseAwareness Month and win! https://t.co/BEY6tIxc6a

#raffle #sweepstakes

[The Children’s Rare Disorders Fund @thecrdfund]

In honor of #RareDiseaseDay, #DonateToWin spectacular prizes at https://t.co/Jw8q7qsl6k!

100% of donations are directed to research. Help us spread the word by retweeting! 🙏🏼

Open to US and UK residents. See official rules for details.

#prizedraw #sweepstakes #giveaway

[The Children’s Rare Disorders Fund @thecrdfund]

It’s #RareDiseaseAwarenessMonth! Meet our founding family to learn more about The Children’s Rare Disorders Fund at https://t.co/LVPBj5u5sH

[The Children’s Rare Disorders Fund @thecrdfund]

It’s almost #GivingTuesday! Make your donation count - 100% of donations fund cure development for rare genetic disorders. Donate at https://t.co/lcbIxkNs5y. #ChildrensCharity #RareDisease

[The Children’s Rare Disorders Fund @thecrdfund]

What is #genetherapy anyway? Here, we break it down for you. 📚 #GivingTuesday #childrenscharity