Putting RDPF!

We are a non-profit that provides eactionable information on clinical trials and drug development to patients with rare diseases. #rarediseases

[Putting RDPF! @PuttingRDPF]

NAACP - We've got some news for you. If you have a budget of $24 million per year and you can't make the effort to provide a letter of support to add Sickle Cell Disease to FDA's Tropical Disease PRV List, after MULTIPLE requests, you are IRRELEVANT! #nomoreexcuses #JustDoIt

[Bryan Behar @bryanbehar]

About Simone Biles: “There is nothing remotely courageous, heroic or inspiring about quitting” said Piers Morgan, who quit his TV job in the middle of a broadcast.

[Sherri Shepherd @sherrieshepherd]

You have sisters all over the world who support you @Simone_Biles! I hope you know that! 🖤

#SimoneBiles #Olympics

[Putting RDPF! @PuttingRDPF]

@Simone_Biles Tomorrow's another day, and you will get through this. You are an inspiration.

[Putting RDPF! @PuttingRDPF]

@PTMcGann @AssocPHON Sounds good.

[Putting RDPF! @PuttingRDPF]

@MackenzieScott is giving away Billions. PRDPF! have been contacted by a father in Turkey. His daughter has an ultra rare condition that is a drain on the family's resources. We have tried to help them, but what they need is cold hard cash. A fraction of the Billions would help.

[Putting RDPF! @PuttingRDPF]

Mackenzie Scott is giving away Billions. PRDPF! have been contacted by a father in Turkey. His daughter has an ultra rare condition that is a drain on the family's resources. We have tried to help them, but what they need is cold hard cash. A fraction of the Billions would help.

[VICE News @VICENews]

“I guess I don’t trust any police right now,” Hunter's grandmother said. “Won’t nobody tell us anything. The body hasn’t been released." https://t.co/WvK6TCf6Ma

[Putting RDPF! @PuttingRDPF]

@mackenziescott Mrs. Scott - How can PRDPF! reach out to your team? A father with a young disabled child, with an ultra rare disease is urgently in need of support. He is based in Turkey, where the lack of structure has made it incredibly difficult for this child. We told them to contact you.

[Putting RDPF! @PuttingRDPF]

Mackenzie Scott is giving away Billions. PRDPF! have been contacted by a father in Turkey. His daughter has an ultra rare condition that is a drain on the family's resources. We have tried to help them, but what they need is cold hard cash. A fraction of the Billions would help.

[Putting RDPF! @PuttingRDPF]

@NAACP - We've got some news for you. If you have a budget of $24 million per year and you can't make the effort to provide a letter of support to add Sickle Cell Disease to FDA's Tropical Disease PRV List, after MULTIPLE requests, you are IRRELEVANT! #nomoreexcuses #JustDoIt

[Memej99-SickleCellLifeOfMemej @Memej99]

Using my Liquid I.V. to multiply & replenish water intake. I'm already weak & fatigued from the crisis, I don't need 2 be dehydrated too. I'm sure fellow #SCWarriors know this, but my GOD, #SickleCellPain from dehydration is 2x as excruciating!😖😭Painful

#SickleCellLifeOfMemej

[Putting RDPF! @PuttingRDPF]

@utdreport We need more like him. He is already living a great legacy.

[Putting RDPF! @PuttingRDPF]

@NAACP - We've got some news for you. If you have a budget of $24 million per year and you can't make the effort to provide a letter of support to add Sickle Cell Disease to FDA's Tropical Disease PRV List, after MULTIPLE requests, you are IRRELEVANT! #nomoreexcuses #JustDoIt

[Putting RDPF! @PuttingRDPF]

SICKLE CELL CURES. Please share and help save lives. Register here for the FREE webinar 28 May 2021.
https://t.co/GhVYalmwWi

@LarenzTate @TheRealTBOZ @ToneTime10 @missjourdandunn @BGarrett_5 @WBLS1075FM @V103Atlanta @NPRHealth

[Putting RDPF! @PuttingRDPF]

Please join us. Please share. FREE WEBINAR on 28 May 2021
Register now at https://t.co/LDVdsP0wWT

Sickle Cell Disease patients and parents of children with Sickle Cell Disease have an opportunity to find out about cures.
#sicklecellcures #genetherapy #Webinar11

[Putting RDPF! @PuttingRDPF]

Please join us. Please share. FREE WEBINAR on 28 May 2021
Register now at https://t.co/LDVdsP0wWT

Sickle Cell Disease patients and parents of children with Sickle Cell Disease have an opportunity to find out about cures.
#sicklecellcures #genetherapy #Webinar11

[Putting RDPF! @PuttingRDPF]

Knowledge is power. Parents and patients impacted by Sickle Cell Disease can find out about approaches that can address the underlying causes of this disease. Hear from the physician experts who provide these approaches.
Register at https://t.co/F59NZwbH9g
#SCD #curative

[Putting RDPF! @PuttingRDPF]

@PTMcGann @AssocPHON Dr. McGann - I like this idea. Are you planning to spearhead it. Please contact me at [email protected]. We have some ideas for eduation of ER staff, and an ID card for patients. We would like to find other collaborators. There is a need for real change in the treatment of SCD.

[Putting RDPF! @PuttingRDPF]

@w_sicklecell Happy Birthday!