An international research team is mapping out the genome of Lyme disease and developing web-based software for future investigations. Learn more: bit.ly/3SVfPsW #LymeDiseaseAwareness

August is Gastroparesis Awareness Month! Take a look at these helpful ideas on how you can get involved to raise awareness too. Learn more: bit.ly/3Mchw1J #GPImpact IFFGD

Interview: Jonathan Cappiello talks about his ultra-rare diagnosis, the importance of storytelling, and how he hopes the 1 of 20 Podcast makes a difference. Learn more here: bit.ly/3WYSxnA #raredisease

Erin Santos-Primis of Isabella Santos Foundation discusses the challenges of rare pediatric cancer fundraising. Learn more: bit.ly/4cJz3c6 #childhoodcancer

The U.S. FDA has announced a public meeting to discuss the creation of a Rare Disease Innovation Hub. Learn more here. bit.ly/4cEq4Jf

Patient connection is so important! Bonnfire and Marta discuss their experiences at TheMarfanFoundation's 2024 Global Virtual Conference for Marfan syndrome, LDS, and VEDS. #marfan #loeysdietz #VEDS Get inspired here: bit.ly/3T4Lbxz

Researchers have used a new technique to study neurons in a lab setting, allowing them to bypass the need to rely on a brain biopsy. Learn more here. bit.ly/3yMXish #alzheimers

New Podcast Episode: Professional speaker and patient advocate Valen Keefer discusses navigating a polycystic kidney disease (PKD) diagnosis, learning to be a patient, organ transplantation and more. Listen here: bit.ly/4cHqkaF . . . . #PKD #KidneyDisease #ChronicIllness

Did you know that September is #Dystonia Awareness Month? Come along with James in this quick video to learn more about it. Share the video to help spread awareness!

Rare disease parent George Simpson, whose child has Charcot-Marie-Tooth disease, talks about the challenges faced by rare families. bit.ly/3Xvpc5E #CMTAwareness #CMTAFamily

Updates on Jenny Decker's solo sailing trip around the world for Charcot-Marie-Tooth #CMT awareness: bit.ly/3Mwj3zE

A recent trial showed encouraging results for TEZSPIRE as a treatment for #COPD in patients with certain biomarkers. Read more here: bit.ly/3Zgexga #BreatheBetter

Neuroinflammation is of particular interest to researchers trying to halt Parkinson's and Alzheimer's progression. Learn more here: bit.ly/3z3z3Gr #parkinsonsawareness #alzheimersawareness

In the hit Amazon superhero series "THE BOYS" the character Black Noir is depicted as living with #narcolepsy. Read to learn why: bit.ly/3XjCNvr

Azafaros is investigating a treatment that shows positive results in patients with #lysosomal storage diseases. Learn more here: bit.ly/4d2fNH9 #raredisease

In a recent podcast episode, Joe Rogan invited an HIV/AIDS denialist to spout falsehoods about the disease. Learn more: bit.ly/3B4rEai #hivaids #HIVawareness #endHIVstigma

Read the latest from Heal Canada in their September 2024 issue of My Blood, My Health! bit.ly/3B6wy6M #ThisIsBloodCancer #BloodCancer

We’re excited to be involved with Mediaplanet UKIE on the Rare Diseases campaign, launching today in the The Guardian and online. Follow the link to read more tinyurl.com/yenrs2rw #RareDiseases2024

The first local annual Pump It Up for Platelets walk is this Saturday (9/21) in Williamsburg, Virginia -- Patient Worthy's hometown! This event coincides with ITP Awareness month. Learn more here: bit.ly/4gmy3Op #ITPAwareness #RareDisease #ChronicIllness PDSA ITP SUPPORT

Here's how you can get involved in Charcot-Marie-Tooth Disease Awareness Month: bit.ly/3XtSi3W #LetsBeatCMT #CMTSpeakOut #CMTWeGotThis