Care-for-Rare America

We help children with rare diseases. Cutting-edge research, comprehensive treatment, and educational programs. Collaborative worldwide network of experts.

[Care-for-Rare America @CareforRareUS]

Many thanks to
@ChildrensMercy
and
@GarminCycling
for such a warm welcome!

[Children's Mercy @ChildrensMercy]

Safe travels to Jörg! He's biking the U.S. to raise awareness for @CareforRareUS and at @ResearchCM. A #RareDisease diagnosis takes years and together we want to change that - providing answers sooner. Thanks @Garmin @GarminCycling for supporting his journey and our mission!

[Care-for-Rare America @CareforRareUS]

@ChildrensMercy @ResearchCM @Garmin @GarminCycling Many thanks to @ChildrensMercy and @GarminCycling for such a warm welcome!

[Care-for-Rare America @CareforRareUS]

A remarkable technological advancement, still in its infancy but which may positively impact children with rare diseases. https://t.co/vljdk5Wjhg

[GFPD @thegfpd]

Today is #WorldBloodDonorDay and we need your help spreading awareness! Many of our #GFPDWarriors rely on blood transfusions for survival. Without #blooddonors we would not have the blood needed for this life saving treatment.
#GFPD #PBDZSD #DonateBlood #BloodDonor #GiveBlood

[Care-for-Rare America @CareforRareUS]

Jorg has hit the mid-way point on his cross-country trip! Here he is with new and old friends in Groton, South Dakota! Support his ride here:
https://t.co/Pf6N27zhp3

[Care-for-Rare America @CareforRareUS]

A remarkable statistic!

[Rare Disease Day @rarediseaseday]

Did you know that there are over 300 million people worldwide living with rare disease?

This means that there as many people living with a rare disease as there residents of the USA- the third largest country in the world, by population.

[EURORDIS-Rare Diseases Europe @eurordis]

In addition to our 💻 resource centre, EURORDIS has teamed up with https://t.co/BQEqPKoVCU to provide free housing abroad for Ukrainians with rare diseases who are fleeing the country. If you need a safe place to stay, please go to
👉 https://t.co/gDqt3ji0C7
#StandWithUkraine

[Care-for-Rare America @CareforRareUS]

Rare pediatric diseases are agonizing for families — and extraordinarily expensive — regardless of geographic location. https://t.co/3fni6mste8

[Care-for-Rare America @CareforRareUS]

🇺🇦 Ukraine update: These may look like random suitcases, but they are filled with desperately needed medicine. They were personally delivered to the military hospital in Kiev (which continues to treat children) by a friend of Care-for-Rare. Donate now: https://t.co/aVrdgG5ZOL.

[Care-for-Rare America @CareforRareUS]

Thank you to the Los Banos Fire Department for hosting Jorg on the 1st night of his cross-country journey. He spent night 2 in Kerman and now is on his way to Corcoran, CA. You can support his mission here: https://t.co/Pf6N27zhp3. #JorgsJourney

[Care-for-Rare America @CareforRareUS]

#JorgsJourney '22 has begun! He set off this morning from Walnut Creek, CA, heading toward his first stop 120 miles away. Donations in honor of his trip can be made here: https://t.co/Pf6N27zhp3

[Care-for-Rare America @CareforRareUS]

You can help by donating here:
https://t.co/uEm3hZBDs3

[Care-for-Rare America @CareforRareUS]

Our partner hospital in Germany is now caring for 6 seriously ill Ukrainian refugee children. Two are featured in this news story. Although it's in German, the terror and desperation of the parents is easily understood via the photos and videos. https://t.co/4O0WoLHUKl

[EveryLife Foundation @EveryLifeOrg]

Thanks to the tremendous momentum created by #raredc2022 and the 370 meetings between rare disease advocates and their members of Congress, the STAT Act will be discussed in a Congressional hearing

Ask your members of Congress to co-sponsor the #STATAct https://t.co/tRadu9pI6n

[Care-for-Rare America @CareforRareUS]

Jorg Richter begins his coast-to-coast cycling tour on March 22 in San Francisco! Help kick off his journey in high spirits by donating TODAY: https://t.co/Pf6N27zhp3. #JorgsJourney

[National Organization for Rare Disorders (NORD) @RareDiseases]

NORD is offering financial assistance to #caregivers of children or adults' diagnosed with a rare disorder through the Rare Caregiver Respite Program. Check your eligibility and learn how to apply on NORD’s website: https://t.co/78S6AcaYky

[Care-for-Rare America @CareforRareUS]

Ukrainian children with life-threatening rare diseases are at risk of not receiving the care they need. We're working with our global alliance to ensure continuous care. Learn more here: https://t.co/uEm3hZBDs3

[RareConnect @RareConnect]

Today is #InternationalWomensDay and from RareConnect we want to honor all those mothers who fight every day to raise their children with #rarediseases and to all the women who suffer from a #raredisease.

[Care-for-Rare America @CareforRareUS]

Ukrainian children with life-threatening rare diseases are at risk of not receiving the care they need. We're working with our global alliance to ensure continuous care. Learn more here: https://t.co/uEm3hZBDs3

[Care-for-Rare America @CareforRareUS]

Ukrainian children with life-threatening rare diseases are at risk of not receiving the care they need. We're working with our global alliance to ensure continuous care. Learn more here: https://t.co/uEm3hZBDs3