Can you believe it? The new RRPF website is here! The new website was designed with you, our RRP community, in mind. We are excited to introduce you to the new website and all of its components, as well as tell you about some projects for the website that will start construction immediately.
First, the logo. The RRPF logo has been the multi-colored paper-doll figures for several years. When the RRPF team sat down with the website design company, we knew that we wanted the website and the logo to better reflect RRP and the hope that runs so deep within our community. With that thought in mind, the new RRPF logo uses blues as its primary color to represent the air we breathe, because “While I Breathe, I hope” has been a phrase used by the community to represent both breathing and our hope of never having to worry about struggling to breathe again. The blue to the left of the RRPF name is a beautiful symbol of that air we are so thankful for. Now our logo better represents our disease, our hope, and is easier to identify to those outside our community.
Next, you will quicky notice the “Join the RRPF” feature on the website. This is the feature we will be using to send the new newsletter, our resource to notify members of upcoming events/RRPF board meeting minutes and budget information, as well as the feature we will use to help identify new volunteers. We also hope this feature allows us to better communicate registry information.
A new feature we are very excited about is the RRPF Blog/Patient Stories page. Many of you have so graciously shared your RRP story, and now we will have a way to share that story with our website visitors, our RRPF members, and our RRP clinicians and researchers. We will feature patients, clinicians, researchers, exciting RRP news that we want to go deeper into than the newsletter will allow, as well as have blog topics that will help with the numerous issues that can and do occur during the RRP journey. If this is something you would like to be part of, use the “Contact the RRPF” feature to let us know you have a story/video that you would like to share. We will give you the guidelines and you can leave the editing part to us.
We have built in a much easier way to make donations to the RRPF in our new website. Your information is secure, and no one can see your personal financial information. You can also access the methods for corporate donations, employer deducted donation instructions, and how to mail a paper check if you prefer to donate in that way. Little Green Light has helped to make donating to the RRPF a smooth and stress-free process.
The new website has made a giant leap forward on the RRP MD search database. You will find it quite easy to use and the search is done by your location and how far you are willing to travel. You can also indicate if you need a pediatric otolaryngologist, as well as see if the MD is a fellowship trained laryngologist. There is also an international search option. We have also added a new pulmonary specific MD database of those clinicians we know have had experience with a pulmonary RRP patient. If you have a clinician that would like to be included, they will need to complete the form on the website to ask to be listed.
Research and clinical trials information is now just a click of the mouse. We will keep this up-to-date and add information as quickly as it is shared with us.
In the “About Us” you will find who the RRPF Board is, as well as who the RRPF regional/local contacts are. The RRPF is ready to grow this regional/local contact team, so be watching for a volunteer role description and a call to apply very soon.
RRP Patient Registry section now has more detail on how to apply, why to apply, and how that data is used. You will see there are videos to help walk RRP Warriors through the process. We will also be sharing data with you from the registry in the newsletter, so please use the “Join” feature on the website.
In the Patient Resources section, you will see helpful tips, some FAQ’s on commonly asked questions, as well as a kid friendly video on RRP. We are thankful to Operation Airway for agreeing to sharing this video with us. You will also see information for PALS. This is a free service to help get patients to expert care. The RRPF is excited to work with the PALS organization.
What else can you be watching for? First, a safe, secure Kids Zone. Password protected, access will be given to the parent to share with the child. We will have vetted moderators available.
Next, our goal of creating a cohesive RRP Research Network is starting with the build of a secure, compliant portal for researchers to share in real-time. We are hopeful this will bring together RRP Research in a way that allows on-going communication between researchers around the globe, as well as help end unnecessary duplication of research already done multiple times.
As we have changed the look of the RRPF and the website, one thing has not changed-our commitment to you, the reason we exist. Research, advocacy, patient support are still our why. This is the beginning of a new chapter for the RRPF, and we are thankful that you are part of all that we do. The RRP ribbon will not be changing, and we are working to soon have a patient welcome packet that includes a ribbon for you to wear.
We are here for you.
Our deepest gratitude,
The RRPF Board