What's New at Rare Patient Voice?
A Message of Thanks from Wes Michael
At Rare Patient Voice, our community is everything. We’d like to take a moment to thank you, the rare and non-rare disease patients, family caregivers, patient advocacy groups and members who have signed up with Rare Patient Voice. It’s our honor to help you share your voices with researchers and companies developing new products, treatments, and approaches to improve lives.
In this video , RPV President and Founder Wes Michael talks about how every voice matters, and the sincere gratitude we have for every member of the RPV community.
Record a Video, Receive a Rarity!
Help us spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As thanks for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card!
Follow these steps to record and submit your own video!
Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
The NCBRS Worldwide Foundation is the only global organization supporting those affected by Nicolaides-Baraitser Syndrome, their families and carers, and the professionals who support them. We originally started as a parent support group in 2010 in the UK, after our Co-Founder Lee Reavey’s son was attending Great Ormond Street Hospital for Children (GOSH) in the UK, when he was noticed by a geneticist familiar with another NCBRS child and then clinically diagnosed and finally, a genetic diagnosis at the age of seven after the gene had been identified in 2012.
After many years and conversations between our Co-Founders, Lee Reavey and Helen Robinson, it was important to them to increase awareness and support and so it was decided to start a global organization. In June of 2020, this dream became a reality and the NCBRS Worldwide Foundation was established.
NCBRS is a rare genetic condition that is present at birth, is usually recognized during childhood, and can affect anyone. Currently, there are fewer than 250 confirmed cases worldwide. NCBRS is caused by a change in a gene called SMARCA2 located on chromosome 9.
Our vision is to create a global community where families, healthcare professionals and researchers work together to ensure that every person diagnosed with Nicolaides-Baraitser Syndrome has every opportunity to reach their full potential.
Our mission is to support and educate families, carers and professionals who work with them. Together we will work to promote awareness and understanding of the syndrome. We will advocate for scientific research that increases the medical knowledge of NCBRS and best treatments. Still, not a lot is known about NCBRS as it is still a fairly newly described syndrome. We encourage more people to learn more about NCBRS, as this could lead to someone’s diagnosis.
For more information, visit us at www.ncbrs.com.
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
You will earn $100 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients over $10 million dollars since 2013 for participating in research studies.