Osteogenesis Imperfecta Patients: Access Free Support Resources Today!

Osteogenesis Imperfecta Patients: Access Free Support Resources Today!  

Probably Genetic is excited to announce that we have launched a program dedicated to supporting the Osteogenesis Imperfecta community. We have developed a patient/family-initiated platform for OI families to access resources such as specialist and treatment explainers, clinical trial information, and access to a live OI specialist support team.

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Access the platform via the following link:  https://bit.ly/3HKsEk8

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*Note: All information provided is stored securely according to the most stringent data privacy practices and HIPAA regulations. Given this stringency, Probably Genetic is the sole data custodian of all information submitted to us, with no identifiable information or contact information ever shared with third parties unless explicit patient consent is given. Submitting individuals can also request to have all data and information deleted at any time.

Information about the program:

Accessing the program involves completing an online symptom checker created specifically for OI families to describe their experiences in their own words. This program aims to amplify the patient’s perspective of life with OI, increase awareness of OI, and help all OI patients get the care they need and deserve. 

FAQs:

Q: What is done with the information provided in the form?

A: All information entered into the Probably Genetic form is stored according to the most stringent industry data security practices and complies with HIPAA regulations. Individuals completing the symptom checker can access PG's data privacy and practices information at the start of the symptom checker and must also read and agree to a detailed informed consent policy prior to completing a submission, which outlines all practices and implications of submitting to the platform. Any information that is shared with third parties is completely de-identified and aggregated and is shared to increase understanding of the patient experience of rare genetic disorders. Participants in the OI program can also opt-in to be contacted by a dedicated, OI-specific patient support team - this only occurs if individuals explicitly consent via a stand-alone question within the form to their contact information being shared. Individuals can also reach out to the Probably Genetic team at any time to request their information be permanently deleted from our system.

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Q: Why are there specific questions about symptoms?

A: The questions are designed so that OI families have a place to accurately and comprehensively describe their symptoms in a patient-friendly way. We want to be sure that individuals with differing presentations of OI can complete the form. This allows us to increase understanding and awareness of the diverse presentation of OI directly from the perspective of affected individuals and their families.

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Q: What information should I expect to receive via email/mail?

A: Once you complete a submission, you will gain access to your own patient portal and be sent OI-specific information and resources relevant to you. You can also then be notified via email of any updates to the OI program or any relevant future initiatives e.g., relevant testing or further opportunities specific to OI. If you explicitly consented to this, your information will also be shared with a dedicated OI patient support team so they can contact you directly. No information or contact by mail should be expected at this time - address information allows us to get an understanding of the geographic distribution of OI patients and may be relevant to future initiatives e.g., if we need to send you an at-home testing kit.

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If you have any questions or feedback, you can contact the Probably Genetic team directly at hello@probablygenetic.com

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About Probably Genetic

Probably Genetic conducts US-based, patient-initiated programs that offer resources to individuals suspected of having rare genetic disorders. They have been working with rare disease communities since 2019, and have provided free genetic testing and counseling to thousands of patients experiencing pediatric seizures, mitochondrial disorders, dementia, and immunodeficiencies but who have not been able to access genetic testing.