Just Diagnosed?

You Are Not Alone!

This organization exists for the purpose of welcoming and supporting new families as we work together to pave the way for a better future.

We are creating a path for children with CHAMP1 disorders to receive treatment through research and our community working together.

Reach Out To Us

All our board members are also CHAMP1 Parents. Reach out below.

Join Our Community

Become a member of our private family support Facebook group.

Get Involved

Help further research into CHAMP1 by joining our registry & completing the Rare-X surveys.

Provide details below to join the CHAMP1 Patient Registry.

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Parent/Guardian Information

Parent/Guardian 1 Name

First

Last

Parent/Guardian 1 Name Email

Parent/Guardian 1 Name Phone

Parent/Guardian 2 Name (If Applicable)

First

Last

Parent/Guardian 2 Email

Parent/Guardian 2 Phone

CHAMP Information

Name

First

Last

Date Of Birth

Sex At Birth

Male
Female

Photo

Click or drag files to this area to upload. You can upload up to 5 files.

A photo of your CHAMP

Address 1

Town/City

Country

Address 2

State/County/Province

ZIP/Postcode

Diagnosis Information

I have a genetic report detailing CHAMP1
I have a letter of diagnosis detailing CHAMP1 or other related documentation
I know the genetic variant details

Terms & Conditions:

Research Privacy Policy

I have read the Research Privacy Policy

View Policy Here

Consent

I Agree

I hereby grant CHAMP1 Alliance composed of The CHAMP1 Research Foundation of 1367 Whitewood Ave. Spring Hill, Fl. 34609 and The CHAMP1 Research Foundation - Europe of Via Trattati di Roma, 20 – 46023 Gonzaga (MN) – Italy, CHAMP1 UK of Wimborne,
Dorset, UK, (“CHAMP1 Alliance”), the authority to process my personal data including certain special category personal data for the purpose of participating in the CHAMP1 registry.
I have been made aware that I can withdraw my consent any time without detriment and effect for the future.
I have reviewed the CHAMP1 Alliance’s Research Privacy Policy.
I have been made aware that for data queries I should contact the CHAMP1 Alliance at [email protected]

Participation Terms

I Agree

I agree that I/my minor child may participate in CHAMP1 Alliance’s CHAMP1 Registry (“Research Project”) conducted by CHAMP1 Alliance composed of The CHAMP1 Research Foundation of 1367 Whitewood Ave. Spring Hill, Fl. 34609 and The CHAMP1 Research Foundation - Europe of Via Trattati di Roma, 20 – 46023 Gonzaga (MN) – Italy, CHAMP1 UK of Wimborne, Dorset, UK (“CHAMP1 Alliance”)

I hereby agree that my minor child may participate in the Research Project being conducted by CHAMP1 Alliance, on the following Terms and Conditions.

1. GENETIC REPORT
1.1. If I am unable to provide a genetic report at this time, I agree to provide the genetic report within 2 months.
1.1. The genetic report will be validated by one of our genetic counsellors.
1.2. In absence of a genetic report, any other documentation provided can be used by our genetic counsellor to validate the diagnosis.
1.3. If required our genetic counsellors can support you in getting your report.
1.4. The CHAMP1 Alliance can, at our discretion, extend the 2 month deadline.

2. PRIVACY AND CONSENT
Subject to CHAMP1 Alliance’s Research Privacy Policy and my expressly given consent:
2.1. I will allow my/my child’s genetic report to be processed and stored by CHAMP1 Alliance.
2.2. I will allow my/my child’s Personal Data to be processed and stored by CHAMP1 Alliance.
2.3. I will allow my/my child’s Special Category to be processed and stored by CHAMP1 Alliance.

3. GENERAL
3.1. I will allow my/my child's anonymized genetic variant and amino acid change to be shared with researchers working with the CHAMP1 Alliance.
3.2 I will allow my/my child's anonymized genetic variant and amino acid change to be shared by the CHAMP1 Alliance.
.3. I will allow my/my child’s genetic report to be shared with researchers working with the CHAMP1 Alliance.

4. CHAMP1 REGISTRY
4.1. I will allow my/my child’s genetic report/information to be stored by CHAMP1 Alliance.
4.2. I will allow my personal information to be stored by CHAMP1 Alliance.
4.3. I will allow my or my child's anonymized genetic variant and amino acid change to be shared with researchers working with the CHAMP1 Alliance.
4.4. I will allow my/my child’s genetic report to be shared with researchers working with the CHAMP1 Alliance.
4.5. I will allow my the CHAMP1 Alliance to contact me using the provided information for uses not limited to research, marketing, further consent requests.

5. I understand and agree that unless expressly agreed to the contrary neither I nor my minor child will own any rights in the Research or the Research elements, or receive any monetary compensation relating thereto. I am granting CHAMP1 Alliance a free, non-exclusive, irrevocable license to use and commercialize all of the submission or otherwise as CHAMP1 Alliance may desire.

6. I hereby warrant that I am a legal competent adult and a parent or legally appointed guardian of the minor child named above, and that I have every right to contract for the minor child in the above regard.

7. I certify and acknowledge that I have read, understood and agree to these Terms set forth above, and that I have read these Terms prior to signing it; that I have the full authority to give my consent and release so that my minor child may participate in the Research Project and that I consent to provide the information concerning my minor child that is necessary to enter the Research.

8. Accordingly, and intending to be legally bound, I voluntarily agree to these Terms set forth herein and acknowledge and agree that my minor child and myself are bound by these Terms. This release shall be binding upon my minor child, me, and our respective heirs, legal representatives, and assigns.

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