National Organization for Rare Disorders’ Post

Were you also stunned by armless #Paralympic archer Sheetal Devi's perfect bullseye over the weekend? This 17-year-old athlete from India is living with the rare genetic condition #phocomelia. Read more: https://lnkd.in/dfkj7JWJ #Paralympics #SheetalDevi #Archery

Looking for a way to use your #GrantWriting skills to help a small #RareDisease nonprofit? Contact the #KdVS Foundation today! They are looking for a volunteer grants officer. Learn more and apply here: https://lnkd.in/drkpY8Vd #KoolenDeVriesSyndrome #KoolenDeVries

If you are living with Maroteaux-Lamy Syndrome, also known as MPS VI, and need financial assistance to pay for health care costs, NORD and the National MPS Society can help. Apply for assistance: https://bit.ly/4dNQd9r or email [email protected] #MPSVI #MPS #Mucopolysaccharidosis #MaroteauxLamy #MaroteauxLamySyndrome

The cost of #healthcare is heavier on #RareDisease patients, particularly those in marginalized groups. This challenge requires all of us to fix it: providers, insurers, legislators, advocates. Read more: https://lnkd.in/eqV4bwdb This first-of-its-kind survey was conducted by NORD and the Rare Disease Diversity Coalition.

Early bird pricing for the 2024 #NORDSummit closes September 9! This is your last chance to save $300 per ticket to this must-attend event all about #RareDisease research and orphan treatment development. Register today: https://nordsummit.org/

Register for the Wilson Disease Association Annual Conference in Charlotte, NC October 4-6! Meet others in the #WilsonDisease community + learn about cutting edge research and how to live well from top experts: https://bit.ly/3yHYlJW #LiverDisease #Liver #Hepatology #Ophthalmology #HepatolenticularDegeneration #NorthCarolina

Physicians, listen to this "Ask the Expert" podcast episode featuring Dr. Shuvro Roy of UW Medicine, a NORD #RareDisease Center of Excellence, discussing "The Role of Physicians and Patients in Legislative Advocacy." https://srna.ngo/leg-adv

Hey #Oklahoma Rare Action Network members and interested volunteers! Join NORD in-person at United Way of Central Oklahoma on Friday, Sept. 27 from 9am-1pm for a #RareDisease advocacy workshop! Register here: https://bit.ly/4fRXwPA NORD staff will provide: • Education on Rare Disease Advisory Councils (#RDACs) • A workshop on how to advocate with legislators and their staff • An overview of #NORD and how you can participate in raising awareness for the rare disease community! Refreshments will be provided in the morning, and lunch will be provided in the afternoon. We hope you'll join us! #OklahomaCity #OKC #Tulsa #DelCity #MidwestCity #NormanOklahoma

An experimental #GeneTherapy improved the health of one of this mom's children with spastic paraplegia 50 (#SPG50). But her other child with SPG50 has not received the therapy, and the clinical trial has run out of funding. This is why investment in #RareDisease research is so important. Our economy needs to work for rare disease families - every company, every city, every state, and every politician needs to take up this cause and do their part to bring hope and treatments to all. Read more: https://lnkd.in/eTq7i8Ju #SpasticParaplegia50 #SpasticParaplegia #Paraplegia #ClinicalTrial #ClinicalTrials #Biotechnology

#Arkansas Rare Action Network members are invited to join us in-person at the State Capitol on Saturday, September 28 from 10:30 a.m. to 2:00 p.m. for a #RareDisease advocacy workshop! New volunteers are welcome. Register here: https://bit.ly/4dMv9jF